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Beyond the Swagger

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By Felix “Swagger” Jacquez Garcia

Back in the day (pre-2000s), most adult community members with severe hemophilia had joint damage from lack of prompt treatment, perhaps an inhibitor, or the infamous hardheaded noncompliance from which some of us suffered. Though plenty of damage happened in wrists, elbows, and shoulders, it seems most of it was in weight-bearing joints – hips, knees and ankles. This resulted in many of us having an obvious limp. We accepted that limp and among our blood brothers found humor in it (call it a coping mechanism). We referred to it as the Hemo Swagger. 

In high school and before my first total knee replacement, I used a cane to get around. I owned that look like I bought it with a Visa card! I even had a couple of fancy tweed and felt hats to complete the haughty look. After healing from knee replacement surgery, it was hard for me to stop carrying the cane. The swagger was gone (at least for a while), and I didn’t need the help to walk, but my cane had been a part of me for such a long time, I struggled to leave it behind.

After high school, I got involved in the bleeding disorders community and quickly realized I wasn’t alone. The Hemo Swagger was a trademark look at every bleeding disorders event I attended! Hemophilia Federation of America even had T-shirts printed with the phrase “It’s not a Limp, it’s a Swagger!” You knew exactly who the blood brothers were by watching them walk from one meeting session to another.

Some of you with young children may feel the urge to feel sad for us about this, but please don’t. The sight literally would bring a smile to my face. I fit in like nowhere else, and that feeling brought me joy. I like to think most of us felt comfort seeing us together like that. Not that we wished pain and discomfort on anyone else – we certainly didn’t, but it brought us a sense of comfort and belonging to know we were not alone in the diagnosis and effects of having a rare bleeding disorder.

In the early 2000s, I began attending advisory board meetings for pharmaceutical companies. I had the opportunity to help influence manufacturers’ educational and marketing materials, the types of programs they sponsored, and even where they focused their research. I remember participating in a meeting and being asked what we saw for the future of hemophilia treatment. 

The two biggest hopes most participants had were treatment in pill form and treatment via subcutaneous injection. At the time, we were told by the experts that neither was realistic. However, the company thought a long-acting product might be the next big thing. For the sake of preserving veins and ensuring prophylactic routines, each of us agreed the improvement would be beneficial for our community. 

Fast forward a few more years, and the first long-acting product hit the market. Soon after, multiple products became available for both hemophilia A and B; treatment options have expanded to allow prophylaxis to become easier for most, and especially for the younger generations. This was the beginning of the decline of the swagger, which for all sorts of reasons, was not a bad thing. 

The evolution of treatment has brought more convenience, efficacy, and less intrusion into the lives of those with a bleeding disorder. This has resulted in increasing adherence to treatment plans and decreasing Annual Bleed Rates (ABR), making it harder to identify a person with a bleeding disorder just by their gait! 

Older guys like me have had surgeries and joint replacements, and many of us now walk with no or barely noticeable limps. The younger generation is faring even better with improved access to health care, new and improved factor products, and prophylactic care. A patient must no longer wait for a joint or muscle bleed to be out of control before receiving treatment.

I still smile when I look at our community gathering at meetings, but now it’s not the Hemo Swagger that makes me smile. It’s the fact we still come together as a community, we still find a commonality, and we still find joy and comradery in one another’s company. I hope future generations never have to experience life with a permanent hitch in their gait, but I am proud to have lived through the days when it was almost impossible to avoid. For those of you who may still have one or if you remember those days, we are family. May we ‘swagger’ together for years to come! 

If you are young and healthy enough to have hopefully avoided serious knee or ankle issues, be sure to thank a “veteran” blood brother or sister for paving the path. Our community fought hard for access to care, demanded better treatments, and pushed for all these new treatment technologies we enjoy today, and more coming in the future (I’m still pushing for a factor pill!).

And about my cane? Since my surgery and treatment have been successful, my cane is now used to shift the AC vent up and down. Don’t worry bleeding disorders family, our bond—whether visible or not—still runs deep through our veins. #HemoStrong

Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!

DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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Pharmacy Benefit Managers: The Squeeze Is on the Health Care Middlemen

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By Shelby Smoak, PhD

If you’ve been watching the news, you have likely heard some chatter about Congress investigating Pharmacy Benefit Managers (PBMs) and creating legislative bills to address concerns with PBMs. You may have also seen a frequent anti-PBM commercial where a patient tries to pick up her doctor–approved medication at a pharmacy. A man jumps in and takes it away, saying she can’t have that particular medication; that she will have to use another one. She then replies, “But you’re not my doctor.” But, he is her PBM...

What are PBMs? What do they do? And why is Congress investigating them? Let’s get started.

What is a PBM?

A pharmacy benefit manager, or PBM for short, is a third-party partner with a health insurance plan that provides prescription drug benefits to the plan members. PBMs function as an intermediary between the entities involved in getting prescription drugs from the manufacturer to the patient’s individual insurance plans.

PBMs create drug formularies, establish drug inclusions and exclusions, and institute specialty drug-cost tiers; they negotiate drug rebates, create pharmacy networks, and handle the claim billing, processing, and payment for drug benefits.

When did PBMs start?

PBMs began operating in the 1960s when they helped insurers control drug spending by using formularies and administering drug claims. Their role expanded slightly in the 1970s and 1980s. It wasn’t until the 1990s that PBMs began to change and expand more broadly. Initially, they were acquired by pharmaceutical companies, but the Federal Trade Commission (FTC) ended the practice, citing concerns over conflicts of interest.

Today, there are over 66 PBMs; however, the top three control almost 89% of the market. Many PBMs are also owned by an insurance provider, a position that echoes the FTC’s concerns expressed several decades ago.1

What does a PBM do?

PBMs work in the background on prescription drugs. They play no role in the physical distribution of drugs, but handle payment and rebate negotiations between the manufacturers, wholesalers, pharmacies, and insurance plans.1

Do I have a PBM?

Yes. If you have a health insurance plan, you have a PBM. In commercial plans, the PBM may be more controlling and restrictive, but even government plans like Medicare use a third-party PBM to help manage prescription drugs for their members.

Is my bleeding disorder medication impacted by a PBM?

Maybe. Historically, PBMs have not been involved in injectables like bleeding disorder medications because these drugs fell almost exclusively on the medical benefit side of insurance benefits and were thus immune from pharmacy claims. But recently, coverage for products to treat bleeding disorders has fallen under prescription drugs, and thus PBMs.

With that, PBMs have made inclusions and exclusions of certain hemophilia and VWD products on their drug formulary. If a VWD, hemophilia A or hemophilia B product is excluded by your PBM, they may not pay for that particular product and will likely intend for you to use another medication.

This means if you are a patient subscriber and your PBM does not support the bleeding disorder medication you are currently using or intend to start using, it may not be covered. Check with your health insurance plan and PBM for more information.

What about copay accumulator adjusters and copay maximizers? Are those part of PBMs?

Yes! Copay accumulator adjusters and copay maximizers are operated by PBMs. When the PBM institutes a copay accumulator, the money paid by manufacturer copay cards for your infusion brand product does not count towards your deductible and out-of-pocket but is instead absorbed by the PBM. You are still responsible for those out-of-pocket cost-sharing amounts.

PBM Investigation and the Law

Why is Congress investigating PBMs?

To answer that question, you must first understand how PBMs make their money.

How do PBMs make their money?

PBMs earn their money in three primary ways:1

  1. Through an administrative fee for their services

  2. Through “spread pricing,” which is the difference between what is paid to pharmacies and the negotiated payment to health plans.

  3. Through shared savings, which is the amount a PBM keeps from a discounted or rebated price from drug manufacturers.

PBMs also earn income by driving patients to in-house pharmacies or PBM-owned specialty pharmacies.

So then, why is Congress investigating PBMs?

According to testimony by a senior economics fellow, Karen Van Nuys, PhD, provided to the Senate Finance Committee this year, evidence shows that PBMs “leverage their position to extract profits in ways that are detrimental to patients, payers, and the drug innovation system more broadly.”

In other words, PBMs negotiate drug prices that are often more favorable (profitable) to themselves than more affordable for patients, and PBMs take money from the healthcare ecosystem that might be better served in drug development. Van Nuys also claims that PBMs increase drug costs and, as example, states that Medicare pays almost 21% more for the same drugs that can be purchased at Costco.2

Going back to how PBMs earn money, some economists argue that the structure inherently favors PBMs seeking a higher drug price from a manufacturer because they could then increase the rebate amount and thus increase the PBM’s earnings. Furthermore, as another testifier to Congress put it, “PBMs force manufacturers to raise their list price, in exchange for formulary placement.”3 Remember, PBMs include and exclude drugs from their formularies. If a PBM excludes a manufacturer’s drug, not only will patients lose access to that drug, but manufacturers would, necessarily, lose revenue from those potential drug sales.

Congress is investigating the truth of these matters and trying to answer the question: Do PBMs increase drug costs?

Are there any proposed legislative bills to address the PBM issue?

Yes, there are several proposed bills in Congress and the Senate. Here are a few:

HELP Copays Act (H.R. 830|S. 1375): “Help Ensure Lower Patient Copays Act”

Seeks to require any third-party payment, financial assistance, product discounts or vouchers, copay assistance or other reductions to apply to a patient’s out-of-pocket expenses.4,5

Patients Before Middlemen (PBM) Act: (S. 1967)

Seeks to prohibit PBM compensation based on the price of the drug as a condition of entering into a contract with Medicare Part D plan.6

Strengthening Pharmacy Access for Seniors Act (S. 2405):

Seeks to increase transparency measures on PBMs and provide seniors with additional options to fill their prescriptions. The bill would end limitations or restrictions that PBMs often place on certain medications without the PBM clarifying its reasoning.7

Pharmacy Benefit Manager Transparency Act of 2023 (H.R. 2816|S.127):

These bills would make “spread pricing” (charging the plan a different amount than the PBM reimburses the pharmacy) illegal and would end “clawbacking” reimbursement payments made to pharmacies.8,9 Pharmacies do not “pay” the PBM, the PBM “clawsback” or deducts paid claim funds directly from the pharmacy’s bank account often without notice and/or with questionable reasoning, often weeks or months later.

Health Care Price Transparency Act (H.R. 4822|S. 1130):

Aims to give transparency and access to pricing information on prescription drugs. Insurance plans must publish the in- and out-of-network charges for covered items and services and the negotiated prices for covered prescription drugs. Plans must provide a tool for consumers to search for this cost information.10,11

Hidden Fee Disclosure Act (H.R. 4508):

Requires that providers give patients transparent cost data from price comparisons before providing treatment. Aims to bolster requirements for PBMs to disclose compensation to plan sponsors and other fiduciaries.12

What’s going on in Florida regarding PBMs?

So glad you asked! Florida is the first state to pass legislation restricting PBM operations within the state. The bill increases oversight of PBM operations and stops a PBM from requiring patients to use an in-house or mail-order pharmacy also owned by the PBM. Its intent is to return business to local pharmacies.13

How is this going to affect me and my medication?

For the time being, nothing will change. Florida residents on state plans may see some differences next year through fewer restrictions and increased pharmacy choices for their prescriptions. The Congressional bills are yet in the future but can result in positive outcomes for patients should they gain support and become law.

What about the Federal Trade Commission (FTC)?

The Federal Trade Commission is also investigating PBMs for anti-competitive practices, the same issue that caused them to intervene in the 1990s with pharmaceutical manufacturers and their own PBMs. The six largest PBMs have been issued “compulsory orders.” These require those PBMs to provide information and records of their business practices.

The FTC has indicated it is seeking information on leveraging fees and clawbacks to non-affiliated pharmacies; steering patients to affiliated pharmacies; using opaque reimbursement methods; and negotiating rebates with pharma manufacturers that impact patient drug cost.

The FTC has also withdrawn its past letters of advocacy for PBMs and has deemed their past conclusions unreliable at this point. Basically, the FTC is saying that what they determined ten or more years ago about PBMs is no longer valid; they want to re-investigate PBMs and draw a more current conclusion regarding anti-competitive behavior.14

What can I do?

If you want to learn more about PBMs, reach out to the BioMatrix Education Team at education@biomatrixsprx.com. You can also contact your Congressional representatives in support.

Financial Resource Guide

Living with a chronic condition can create additional healthcare costs while also impeding one’s ability to work. Our financial resource guide can help. 

DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

References

  1. “Pharmacy Benefit Managers.” NAIC, 1 June 2023, content.naic.org/cipr-topics/pharmacy-benefitmanagers#:~:text=Background%3A%20When%20insurance%20companies%20began,formularies%20and%20administered%20drug%20claims.

  2. Van Nuys, Karen. “Testimony on Pharmacy Benefit Managers and the Prescription Drug Supply Chain.” USC Schaeffer, 31 Mar. 2023, healthpolicy.usc.edu/research/testimony-on-pharmacy-benefit-managers-and-the-prescription-drug-supply-chain/.

  3. Levitt, Jonathan. “Pharmacy Benefit Managers and the Prescription Drug Supply Chain: Impact on Patients and Taxpayers.” United States Senate Committee on Finance. 30 March 2023. https://www.finance.senate.gov/imo/media/doc/Jonathan%20Levitt%20Testimony%20US%20Senate%20Committee%20on%20Finance%20-%20Frier%20Levitt%20 %20March%202023_Redacted1.pdf

  4. Text of S. 1375: HELP Copays Act (Introduced version) - GovTrack.us. (n.d.). GovTrack.us. https://www.govtrack.us/congress/bills/118/s1375/text.

  5. Carter, Barragán, Miller-Meeks, and DeGette introduce bipartisan legislation to ensure copay assistance counts for patients. (2023, February 9). Congressman Buddy Carter. https://buddycarter.house.gov/news/documentsingle.aspx?DocumentID=10927.

  6. Wyden, Crapo, Menendez, Blackburn, Tester and Marshall introduce bipartisan legislation to reform PBMs and bring down the cost of prescription drugs. (2023, June 14). https://www.finance.senate.gov/chairmans-news/wyden-crapo-menendez-blackburn-tester-and-marshall-introduce-bipartisan-legislation-to-reform-pbms-and-bring-down-the-cost-of-prescriptiondrugs#:~:text=The%20PBM%20Act%20would%3A,%2C%20rebates%2C%20or%20other%20fees.

  7. Thune introduces bill to increase transparency of the prescription drug supply chain. (n.d.). U.S. Senator John Thune. https://www.thune.senate.gov/public/index.cfm/2023/7/thune-introduces-bill-to-increase-transparency-of-the-prescription-drug-supply-chain

  8. Rep. Harshbarger Introduces the PBM Sunshine and Accountability Act. (2023, April 26). Representative Diana Harshbarger. https://harshbarger.house.gov/media/press-releases/rep-harshbarger-introduces-pbm-sunshine-and-accountability-act#:~:text=2816%2C%20the%20PBM%20Sunshine%20and,and%20value%2Dbased%20PBM%20choices.

  9. United States, Congress, Senate. “Pharmacy Benefit Transparency Act of 2023.” Congress.gov. https://www.congress.gov/bill/118th-congress/senate-bill/127#. 118th Congress. Senate Bill 127. Introduced Jan. 26, 2023.

  10. Rubin, J. (2023). Ways and Means Committee Approves Legislation Injecting Greater Transparency in Health Care Prices And Lowering Costs for Patients. House Committee on Ways and Means. https://waysandmeans.house.gov/ways-and-means-committee-approves-legislation-injecting-greater-transparency-in-health-care-prices-and-lowering-costs-for-patients/.

  11. United States, Congress, Senate. “Health Care Price Transparency Act.” https://www.congress.gov/bill/118th-congress/senate-bill/1130. 118th Congress. Senate Bill 1130. Introduced Mar. 30, 2023.

  12. McDermottPlus Check-Up: July 14, 2023 - McDermott+Consulting. (2023, July 14). McDermott+Consulting. https://www.mcdermottplus.com/blog/weekly-check-up/mcdermottplus-check-up-july-14-2023/.

  13. Morgan, Lewis and Eric P. Knowles. “Florida Enacts Long-Awaited PBM Transparency and Accountability Bill Into Law.” Frier Levitt Attorneys at Law. 11 May 2023. https://www.frierlevitt.com/articles/florida-enacts-long-awaited-pbm-transparency-and-accountability-bill-into-law/.

  14. FTC Deepens Inquiry into Prescription Drug Middlemen. (2023, May 17). Federal Trade Commission. https://www.ftc.gov/news-events/news/press-releases/2023/05/ftc-deepens-inquiry-prescription-drug-middlemen.

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Understanding Specialty Drug Coverage: Medical and Pharmacy Benefit

By Justin Lindhorst and Regina Valenzuela

Have you ever felt confused or unsure about your healthcare coverage? If you answered yes, you’re not alone. In fact, a recent survey found 56% of Americans report feeling “completely lost” when it comes to understanding their health insurance.1

For patients taking specialty medications, understanding coverage can be even more challenging. This article provides an overview of specialty drug coverage under the medical and pharmacy benefit and includes links to additional resources to help you understand your health insurance.

Background

In the past, health services were all covered under the insurance plan’s “major medical” benefits – the pharmacy benefit did not exist. Starting in the 1960s, insurance companies began providing coverage for prescription medication. The first Pharmacy Benefit Managers (PBMs) were created during this time to act as an intermediary, help health insurance companies control cost, set prescription drug formularies, and process a large volume of prescription drug claims. PBM management of prescription drugs helped create a separate administrative structure outside of major medical benefits for prescription drugs – the pharmacy benefit. In today’s healthcare landscape, the three biggest PBMs control pharmacy benefits for nearly 270 million Americans.2

According to the Kaiser Family Foundation, 48.5% of the population in the United States have health coverage through their employer; 6.1% have individual non-group coverage; 21.1% have Medicaid, 14.3% have Medicare, and 1.3% have military health coverage.3 Coverage for prescription medication varies across each of these different health plans. For employer based, non-group individual coverage, Medicaid, and TRICARE – coverage for health services are managed under a pharmacy benefit and medical benefit. Health insurance companies typically manage their own medical benefit package, but some choose to outsource management of their pharmacy benefit to a separate PBM. This is why some patients have a medical benefits card, and a separate pharmacy benefit prescription drug card. For patients on Medicare – Part A covers in-patient services/hospitalization; Part B is the “medical benefit,” providing coverage for out-patient services, home-health care, and most infused specialty medications; and Medicare Part D covers pharmacy benefits.

Pharmacy Benefit

Many patients who are prescribed specialty medication receive training from a medical provider so they can take their medicine at home. This includes patients on oral, topical, intravenous, or subcutaneous therapies. Specialty medication is typically covered under the pharmacy benefit when the patient self-administers the prescribed medication at home. When a specialty medication is covered under the pharmacy benefit, the insurance company’s PBM has a lot of control over how and whena patient can access their prescribed medicine. Patients may be subject to formulary restrictions, step-therapy, specialty pharmacy mandates, and copay accumulators. Under the pharmacy benefit, drugs are placed into a classification system of different tiers. Lower cost or generic drugs are typically tier I, and specialty medications mostly fall into tier IV – the highest tier. Drug tiers impact patient out-of-pocket costs such as copay and coinsurance. The higher the tier, the greater the out-of-pocket expense for the patient. Coverage under the pharmacy benefit may also be subject to a deductible or max out-of-pocket separate from the medical benefit. Tier IV medications are also subject to more PBM utilization management techniques such as prior authorization. Patients may need to work with their specialty pharmacy and medical provider to demonstrate “medical necessity” for their prescribed medication before they can receive it.

Medical Benefit

Coverage for specialty medication under the medical benefit typically occurs when the drug is administered by a health care professional in a hospital, physician office, or infusion center. Providers often use the “Buy and Bill” method where the drug is purchased and kept by the provider and then the claim is billed to the insurance company after the medication is administered to the patient. The insurance company reviews the claim, and the provider is paid at a later date. Out of pocket expenses for specialty drugs processed under the medical benefit often include deductible, co-pay, and or coinsurance. For patients who have Medicare, 80% of the office-administered drug is covered by Medicare Part B, with the remaining 20% picked up by a supplemental plan purchased by the patient.4 Coverage under the medical benefit occurs independent of the plan’s PBMs, which means patients may avoid some of the formulary restrictions, step-therapy, or pharmacy mandates imposed under the pharmacy benefit.

But Wait! There’s More. 

In the world of health insurance, “It depends” is a common answer to many coverage questions. As previously mentioned, specialty medication is typically covered under the pharmacy benefit if self-injected/self-administered and under the medical benefit when administered by a healthcare provider. But there are cases where coverage is offered for self-injected medication under the medical benefit – typically under employer-based or non-group commercial health plans. Coverage provided for self-injected medication under the medical benefit may be an attractive option for patients who do not wish to have their pharmacy mandated to them by a PBM, when the pharmacy benefit includes step-therapy, a copay accumulator, or the prescribed drug is not included on the pharmacy benefit formulary. 

For patients on Medicare – it’s important to know that most infused specialty medications such as factor products for patients with a bleeding disorder are covered under Medicare Part B, not Medicare Part D. This has a significant impact on out-of-pocket costs because under Part B, 80% of the drug is covered by Medicare, and the remaining 20% is picked up by the patient’s supplemental plan. Under Medicare Part D, there is currently no max-out-of-pocket for prescription drugs – though there is legislation that will begin to address this issue in 2023. 

Another important consideration is how claims billed to the pharmacy or medical benefit impact a patient’s deductible and max out-of-pocket. Many patients with a chronic, expensive, lifelong condition become accustomed to meeting their deductible or max out-of-pocket with their first shipment of medication in the new year. This is because when covered under the pharmacy benefit, associated out-of-pocket costs are immediately applied toward the deductible and max out-of-pocket. Under the medical benefit, the claim submitted by the provider’s office who administered the drug undergoes review before it is approved. This can take time, and associated out-of-pocket expenses take longer to be applied toward a patient’s deductible and max out-of-pocket. 

Still Confused? Your Specialty Pharmacy Can Help.

Health insurance is confusing. The healthcarelandscape in the United States is complex and fragmented, and it’s often a good idea to tap an expert to better understand your health coverage. Reputable specialty pharmacies employ teams of experts in insurance billing and reimbursement. These teams understand how to properly secure authorization for prescribed specialty therapies, how to correctly bill insurance plans for services, and how to connect patients with appropriate resources and programs focused on reducing financial burden. They can also help patients to better understand their coverage for specialty medication by conducting a benefits investigation. A thorough benefits investigation completed by an expert can help patients gain a solid understanding of their coverage options and associated out-of-pocket expenses for specialty medication under their insurance plan – without the jargon and red tape.

BioMatrix is an infusion-focused specialty pharmacy supporting patients with bleeding disorders, autoimmune disorders, neurological disorders, and other rare health conditions. If you’d like assistance understanding how your specialty medication is covered—we can help. Use the form below and we’ll conduct a no-obligations benefit investigation to help you understand coverage for your prescribed specialty infusion therapy.

Financial Resource Guide

Living with a chronic condition can create additional healthcare costs while also impeding one’s ability to work. Our financial resource guide can help. 

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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Video: Navigating Open Enrollment

Are you ready for open enrollment? Open enrollment occurs once annually and is the period of time when consumers can make changes to their health insurance benefits.

Watch this webinar for tips and key information as it relates to:

1. Open Enrollment Dates

2. Insurance Terms

3. Key Questions to Ask

4. ACA Plans

5. Medicare

6. Plans + Policies

7. Financial Assistance Programs

Please direct any questions related to this webinar by email to: education@biomatrixsprx.com

Thank you!

DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE

All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

We value your privacy. Review our Privacy Policy here.

Read More

Understanding Qualifying Life Events for Health Insurance

Life is unpredictable, and circumstances can change in an instant. When it comes to health insurance, these changes can impact your coverage options. Typically health insurance plan enrollment and modifications to existing health insurance plans can only happen during Open Enrollment. This is a window of time that you can enroll or make changes to your health insurance plan. This window of time differs between ACA plans, employer-sponsored plans, and Medicare. However, when life circumstances change, fortunately there's a way to modify your health insurance coverage outside of Open Enrollment: Qualifying Life Events (QLEs). Let's dive into some common QLEs and why these events matter.

1. Marriage or Domestic Partnership

Getting married or entering into a domestic partnership often means combining lives and therefore modifying insurance plans. You and your spouse or partner may have different coverage options, and a QLE gives you the chance to reassess and potentially join the same plan.

2. Birth or Adoption

The addition of a new family member is an exciting event, but it also brings the responsibility of ensuring they have adequate health coverage. Most insurance plans provide a window of time to add your new child to your policy.

3. Loss of Coverage

Losing your existing health insurance can be stressful. It could be due to reasons such as losing your job, aging out of your parents' plan, or no longer qualifying for Medicaid. A QLE allows you to explore your options, including plans on the ACA Health Insurance Marketplace.

4. Relocation

Moving to a new zip code or county can impact your healthcare choices. Different areas may have different insurance plans available. A change in location often triggers a QLE that allows you to reevaluate your coverage.

5. Divorce or Legal Separation

The end of a marriage or domestic partnership can also mean the end of shared health insurance. A QLE provides a chance to find a new plan that suits your individual needs.

6. Changes in Income

Significant changes in your income, such as job loss or a significant raise, can affect your eligibility for subsidies or government assistance. Reporting these changes promptly can help you get the financial support you need.

7. Aging Out of Parent's Plan

Many young adults are covered under their parents' health insurance until they turn 26. When you reach this age, it's time to explore your own coverage options, often through a QLE.

8. Gaining Citizenship or Lawful Presence

Becoming a U.S. citizen or gaining lawful presence can open doors to new health insurance options and may trigger a QLE.

9. Changes in Household Size

If your household size changes due to marriage, divorce, or other reasons, it can impact your eligibility for certain insurance plans and subsidies.

10. Other Exceptional Circumstances

Some QLEs are less common but are equally important. These might include becoming eligible for tribal membership, leaving incarceration, or gaining status as an American Indian or Alaska Native.

In all these scenarios, it's crucial to act promptly. You typically have a limited time window, often 60 days from the date of the event, to enroll or make changes to your health insurance plan. Missing this window could mean waiting until the next Open Enrollment period, which can be costly if you're without coverage in the meantime.

In conclusion, Qualifying Life Events provide a safety net for life's unexpected changes. They help ensure you have access to the health coverage you need when you need it most. If you experience one of these events, don't hesitate to explore your options on HealthCare.gov or through your state's health insurance marketplace. Your health and peace of mind are worth it.

BioMatrix Specialty Pharmacy can also help break down barriers to care and cut red tape by:

  • Conducting a thorough benefits investigation on your behalf ​

  • Providing a detailed outline of coverage specific to your therapy, including whether it is covered under the medical or pharmacy benefit and if a prior authorization is required ​

  • Outlining financial responsibility for prescribed therapy and referring to appropriate financial assistance programs ​

  • Identifying specialty pharmacy service providers available under your plan ​

  • Providing support for timely prior-authorization and appeals 

Financial Resource Guide

Living with a chronic condition can create additional healthcare costs while also impeding one’s ability to work. Our financial resource guide can help. 

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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How to Use HealthCare.gov

HealthCare.gov is a website where people who qualify can sign up for an Affordable Care Act (ACA) health insurance plan—aka a health insurance plan that meets ACA standards established by the federal government. This website serves as the platform for ACA’s Health Insurance Marketplace and offers insurance coverage to individuals, families, and small businesses who may otherwise be uninsured and are not eligible for government healthcare programs like Medicare.

Who can enroll in health coverage through the Marketplace?

Anyone who lives in the US, is a US citizen or national, and not incarcerated can enroll in health coverage through the Marketplace. ACA subsidies, however, are determined by the number of people in a household and income. If your employer offers health insurance, you also have the right to decline that health insurance and enroll in an ACA plan instead. You can find out if you’ll save money with an ACA plan based on your income by clicking here.

When can I enroll/signup?

Typically, you can enroll in a health insurance plan or make changes to your existing insurance plan during Open Enrollment. Open Enrollment for ACA plans begins November 1st for 2024 plans. If you enroll by December 15th, your coverage will start January 1st. If you enroll by January 15th, your coverage will start February 1st. 

Outside of Open Enrollment, certain “qualifying events” can make you eligible to enroll or make changes to a health insurance plan anytime of the year. Some of these events include:

  • Getting married or divorced

  • Having a baby

  • Loss of health coverage

  • Moving to a different zip code or county

You can enroll anytime of the year and start coverage immediately for Medicaid or the Children’s Health Insurance Program (CHIP).

What’s required when creating a HealthCare.gov account?

Setting up an account on HealthCare.gov is fairly simple. You’ll be asked for basic information like your name, address, email, and social security number. You’ll then be prompted to create a username and password and will be given some options for additional account security.

How do I use HealthCare.gov?

Here’s a step-by-step guide on how to enroll in an ACA health insurance plan on HealthCare.gov.

  1. Visit the Website: Go to the HealthCare.gov website by typing "www.healthcare.gov" into your web browser's address bar. You can also click here to get started.

  2. Create an Account: If you are a new user, you will need to create an account on the website. You'll be asked to provide some personal information, such as your name, contact information, and Social Security number.

  3. Log In: If you already have an account, log in using your username and password.

  4. Start an Application: Once you're logged in, you can start a new application for health insurance coverage. You'll be asked to provide information about your household, including the number of people in your household, their ages, and their income.

  5. Explore Available Plans: After entering your household information, you can browse and compare health insurance plans available in your area. You can filter the plans based on various criteria like monthly premium cost, coverage level, and provider network.

  6. Determine Eligibility: The website will help determine if you are eligible for programs like Medicaid or the Children's Health Insurance Program (CHIP). If you qualify for these programs, you will be directed to the appropriate application process.

  7. Enroll in a Plan: Once you've selected a health insurance plan that fits your needs and budget, you can start the enrollment process. You'll provide more detailed personal information and confirm your selection.

  8. Review and Confirm: Carefully review the plan details, costs, and coverage options before confirming your enrollment. Make sure the plan you choose covers your healthcare needs.

  9. Submit Documents: In some cases, you may need to submit supporting documents, such as proof of income, to verify your eligibility.

  10. Pay Your Premium: After enrolling in a plan, you will need to pay your monthly premium to activate your coverage. The website will provide information on how to make payments to your selected insurance provider.

  11. Keep Your Information Updated: It's important to keep your account information and application up to date, especially if your circumstances change (e.g., changes in income or household size).

  12. Renew Your Coverage: If you already have a HealthCare.gov plan, you will need to renew your coverage during the annual Open Enrollment period or when you experience a Qualifying Life Event that allows for a Special Enrollment Period.

If you have specific questions or need assistance with the enrollment process, HealthCare.gov offers customer support and live chat options on their website.

BioMatrix Specialty Pharmacy can also help break down barriers to care and cut red tape by:

  • Conducting a thorough benefits investigation on your behalf ​

  • Providing a detailed outline of coverage specific to your therapy, including whether it is covered under the medical or pharmacy benefit and if a prior authorization is required ​

  • Outlining financial responsibility for prescribed therapy and referring to appropriate financial assistance programs ​

  • Identifying specialty pharmacy service providers available under your plan ​

  • Providing support for timely prior-authorization and appeals 

Financial Resource Guide

Living with a chronic condition can create additional healthcare costs while also impeding one’s ability to work. Our financial resource guide can help. 

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

Read More

Meet Our BioMatrix Pharmacists

BioMatrix is proud to serve patients requiring infused or injectable medications. Our multidisciplinary team works together to help patients gain and maintain access to prescribed therapy while providing support resources designed to make managing chronic health conditions a little easier.

We invite you to meet some of our pharmacists who apply their extensive knowledge and expertise to serving patients.

Diana Bada de Ross | Pharmacist in Charge—Canoga Park, California Location

“To me, treating patients like family means aiming for the best health care by providing nonjudgmental and unconditional service.”

With a passion for helping people be well, Diana has been a pharmacist for 12 years. She strives to engage people in their care and enhance their quality of life by providing effective treatment with timely intervention. In addition to being a PharmD graduate, Diana has her BA in International Business.

Contact Diana

Office: (800) 404-1963
Email: diana.badaross@biomatrixsprx.com

Jessica Caballero, PharmD | Pharmacist in Charge—Plantation, Florida Location   

“I’ve always enjoyed science and healthcare, as well as caring and helping others. I grew up in a developing country and saw firsthand the need for efficient and compassionate healthcare. I realized I could make a difference by becoming a healthcare professional, so I became a Pharmacist. I also volunteered in different brigades in remote areas where the access to healthcare was minimal to none. It has been a very rewarding experience, and I hope I can continue to do so.”

With over 15 years of experience as a pharmacist, Jessica is dedicated to going the extra step to provide supplies and life sustaining medications for patients in a timely manner. She believes in being mindful and trying to put herself in her patients’ positions as well as providing individualized care. Jessica is a Licensed Pharmacist in various states in the USA, has her Masters Degree in Business Administration with Health Management Specialization, and is bilingual in English and Spanish. She also holds a Heart Failure Certification, a Sterile Compounding and Aseptic Technique Certification from Texas Society of Health System Pharmacists, and a Non-Sterile Compounding Certification from The Science of Pharmaceutical Compounding Non-Sterile Training by Medisca.

Contact Jessica

Office: (877) 337-3002 ext 1230
Email: jessica.caballero@biomatrixsprx.com

Alex Leybelman, PharmD | Pharmacist in Charge—Totowa, New Jersey Location

“I always had a passion for science and medicine from an early age. Working in healthcare allows me to combine my passion for science with my love for patient care. I strive to go above and beyond for our patients to make sure that their healthcare needs are taken care of so they can live their lives without worry!”

With a passion for science and patient care, Alex has been a pharmacist for three years. His goal is to provide patients with accessible healthcare, at an affordable price, and with exceptional customer service. Alex has a Bachelor’s in Biology as well as a Doctor of Pharmacy from Rutgers University. He is currently working on his MBA at Oklahoma State University.

Contact Alex

Office: (877) 567-8087
Email: alex.leybelman@biomatrixsprx.com

Beth Curry, RPh | Pharmacist in Charge—Dublin, Ohio Location

"My number one goal in specialty pharmacy is to continue to provide individualized care for each patient."

With her love of both helping people and animals, Beth has been a pharmacist for over 20 years. Her goals in specialty pharmacy include serving patients with care and compassion as well as continuing the pharmacy center of excellence program at BioMatrix. Beth graduated from Ohio Northern University and has her credentials in both Hospital Pharmacy and Infusion pharmacy.

Contact Beth

Office: (800) 622-9321
Email: beth.curry@biomatrixsprx.com

Joe V. John, PharmD, RPh, CSP | Pharmacist in Charge—Garnet Valley, Pennsylvania Location

“Putting patients first and treating them like family means a lot to me. I’m passionate about making a difference in people's lives.”

Joe has 16 years of experience as a pharmacist. His number one goal in specialty pharmacy for serving patients with a chronic health condition is to determine the effectiveness, safety, and appropriateness of prescribed therapy. Joe is a certified specialty pharmacist with a Doctorate in Pharmacy. He is also a Board-Certified Medical Affairs professional.

Contact Joe

Office: (855) 359-9679
Email: joe.john@biomatrixsprx.com

Lacy Burns, PharmD | Pharmacist in Charge—Memphis, Tennessee Location

“My mom is a nurse, and she always inspired me with how she helps her patients and takes such good care of them. I want to be able to help patients get well and feel better; I love interacting with patients and getting to know them and their families/situations. Having a chronic condition is life changing for families, but I am available to help.”

Committed to being available for her patients, Lacy has served as a pharmacist for 13 years. She wants to ensure her patients and their families have what they need to live a full and active life and can always reach out with questions or concerns regarding their medication. Lacy graduated with her PharmD degree from University of TN Health Science Center and also has a degree in Chemistry with a concentration in Biochemistry from the University of Memphis.

Contact Lacy

Office: (800) 962-6339 ext 1309
Email: lacy.burns@biomatrixsprx.com

Todd Thompson, RPh | Pharmacist in Charge—Tyler, Texas Location

“From the beginning of my career in specialty pharmacy, I’ve always treated patients like family. This means considering whether I’d do the same thing for my own family member.”

Todd has been a pharmacist for 33 years. In serving patients with chronic health conditions, his top priority has always been to help improve a patient’s quality of life in the safest, accommodating manner. Todd has a BS in Pharmacy from Southwestern Oklahoma State University and also has his NHIA Home Infusion certification.

Contact Todd

Office: (877) 321-9870
Email: todd.thompson@biomatrixsprx.com

DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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,

Navigating Life With Hemophilia

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By Denise Ruiz

My journey of living with hemophilia is much the same as, yet different than most in our community. Being adopted at just two weeks old, my parents would not have known the reasons behind my ailments and struggles.

As a somewhat clumsy child, I often found myself covered with bumps and bruises; scrapes and scratches always bled much longer than my peers. In puberty, I often had to stay home from school as my menstrual cycles were unbearable with pain and excessive bleeding.

My husband, Jon, and I married in 2004. In July 2006, our first child, Jacob, was born in Washington State. When Jacob was six months old, I took him in for a routine well-baby visit where he received a heel stick. Being in the military, my husband was gone for training as he was scheduled for deployment to Iraq the next month. 

That night I put Jacob to bed as usual. When he woke in the early morning hours, I found his crib bedding covered in blood. Of course, I freaked out – just 22 years old, by myself, with a bleeding baby. Unfortunately, my husband was not able to come home.

At the hospital, the wait for an answer was excruciating. The doctor asked if I had ever been tested for hemophilia. In fact, I had never even heard of it before that moment. Sure enough, Jacob was diagnosed with severe factor IX deficiency. Terror set in, and I immediately began researching what it meant. I was alone and terrified, and it was just the beginning.

Since my husband was going to be gone for a while, we felt it would be best that I move near my parents in California to have help with the baby. My husband ended up being in Iraq for 15 months. I was very fortunate and grateful to have the support of my family during that time.

The following year, it was decided Jacob would have a port placed so he could begin factor replacement three times a week, which I learned to administer at home. For someone with severe hemophilia, I feel Jacob has had a fairly fortunate childhood. With dedicated prophylaxis, he has experienced only a handful of joint bleeds and just one hospitalization due to a fall down a set of stairs.

When Jacob was diagnosed, I was tested as well and found to have 27% factor IX level. The reason for my own symptoms throughout my childhood became clear. I now treat as needed and certainly for any medical procedures.

When Jacob was 4-years old, we welcomed our daughter, Cora – the first of three girls. Ava and Emma followed. Cora is diagnosed with mild factor IX deficiency and is a carrier. Ava and Emma are not affected. My fifth and last pregnancy resulted in the birth of our crazy, comical, wild-child, Brody! At the time, we were stationed in Hawaii, and Brody was born in May, just weeks after COVID-19 paralyzed our country.

Almost from the start, Brody did not fare as well as his older brother. Toward the end of my pregnancy, I was 37 years old and required stress tests twice a week due to my “advanced” age. My daughter broke her arm the night before my appointment, and let’s just say the stress test didn’t go very well. Immediately, I was sent to the hospital and induced. Though the nurses told us it would still be hours before the baby’s arrival, I knew differently. My husband rushed to get to the hospital, arriving just 10 minutes before Brody was born.

Brody’s birth went well; however, a week later, he began developing bruises from the slightest touch, such as his car seat buckle or just being held. He seemed to bruise just by looking at him. Seeing my little boy constantly so black-and-blue was devastating. We wanted to have a port placed, but COVID made everything more difficult. At the time, only children diagnosed with cancer were given clearance to have ports placed.

At Brody’s six-month well-baby medical appointment, he received three vaccinations, two in one thigh and one in the other. One of his legs swelled almost to the point of developing compartment syndrome. I rushed him to the clinic and insisted he be hospitalized. After two hours and several failed attempts, clotting factor was finally administered via a PIC line. It took more than six weeks for the swelling to finally subside and get his leg back to normal. Although we are not sure whether this severe bleed was the instigator, Brody continues to have issues with his hips.

Finally in June of 2020, he was able to have his long overdue port placed. Brody arrived for his surgery covered in bumps, bruises, and even some hematomas. The procedure went well; in short order, most of his bumps and bruises were gone or greatly diminished. Elation and a huge sense of relief settled in knowing I could administer his factor at home as I had been doing with Jacob for several years. Now four years later, Brody continues to do well with factor replacement and his port is holding steady. Jacob is 17 and self-infuses. His port was removed when he was eight years old.

Being a military family, we have moved 17 times in the past 19 years. Currently living in the Washington DC area, we have lived in California, Texas, Washington State, Hawaii, Georgia, and Alabama, moving back and forth to some of the same states. Constantly moving a family already provides many trials and tribulations – throw in a bleeding disorder, and the challenges grow exponentially, especially when having to establish access to care with each move.

I am truly thankful for many of the relationships and friendships we have been blessed to have over the years. I will always be grateful for the Hawaii Chapter, National Hemophilia Foundation for their support; for Ziggy Douglas, the chapter’s executive director who is no longer with us, for taking our family under his wing and for Donna Garner, BioMatrix Patient Care Coordinator, who has seen us through 17 years of moving and access-to-care hurdles. Donna has been our “constant” in all hours of the day and night, from when we lost the ONE bag that could NOT be lost (Jacob’s supply bag) and the countless times someone was hurt and needed extra factor sent ASAP, to just being our support and dear friend through it all.

My husband’s retirement is the light at the end of the moving tunnel. The plan is to leave the military in spring of 2024. We aren’t sure what the future will hold for us, but the message we would like to share is that we know being well-informed and having support is vital to survival in navigating the ever-changing world of living with a bleeding disorder.

Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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,

The Royal Disease

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By Justin Lindhorst and Maria Santucci Vetter

For the first time in more than 70 years, the British monarchy crowned a new king. Prince Charles takes the place of his mother, Queen Elizabeth, who passed away at age 96 on September 8th, 2022. With Prince Charles’ crowning ceremony taking place last May, we thought this would be a great time to revisit the Royal Family and how it was affected by hemophilia.

Queen Victoria

Until the reign of modern-day Queen Elizabeth, Queen Victoria had the longest reign of any female monarch in history. Her sovereignty entered a time that saw progress and growth in nearly every aspect of society. From industry and science to culture and politics, her rule ushered in an era that would later bear her name, Victoria. Taking the throne at age of eighteen and ruling for sixty-four years, Queen Victoria is perhaps one of the most iconic figures in the history of the British monarchy.

Under Victoria, the British Empire rose to become a leading global power. One way the monarchy sought to secure political alliances came through strategic marriages between the ruling royal families. Queen Victoria became known as The Grandmother of Europe as some of her nine children and 42 grandchildren married into royal families across the continent. It was through these marriages that Victoria not only secured political clout, but such practice was also the cause for the passing of a condition the royal monarchy often tried to hide, hemophilia. As carrier of hemophilia, Queen Victoria inadvertently spread the condition from the United Kingdom to the royal houses of Germany, Spain, and Russia. The line of princes with hemophilia in Europe led to the bleeding disorder being coined as The Royal Disease.

Though they lived lavish courtly lifestyles, life for Victoria’s descendants with hemophilia was not easy. At a time when doctors knew little about the condition, there was not much a family could do for their affected children. Though great care was taken to protect the princes, unfortunately, many did not live to see adulthood. The following is an account of The Royal Disease as found in some of the major ruling monarchies of Europe.

The United Kingdom

Prince Leopold, Duke of Albany

Leopold, Victoria’s eighth of nine children, was born at Buckingham Palace. Of four sons, he was the only one with hemophilia. The condition caused Victoria much anxiety, prompting her to keep the prince close to her side. He was followed in permanent attendance by several physicians. Victoria thought it was unnecessary for him to leave the home and even encouraged him not to marry or have children.

Unable to pursue a military career because of his condition, Leopold enrolled in the Christ Church, Oxford University, where he studied a wide variety of subjects. He earned an honorary law degree and became a patron of the arts and literature while serving as his mother’s unofficial secretary.

Despite his mother’s wishes, Leopold sought marriage and considered it his only hope for independence. His health condition caused some difficulty in finding a wife. After several rejections, Leopold eventually married Princess Helen of Waldeck and Pyrmont, a member of the German royal family. Though their marriage was brief, the couple was happy and gave birth to a daughter, Alice, Countess of Athlone, and a son, Charles Edward.

Due to joint pain associated with his hemophilia, the winter months were always difficult for Prince Leopold. In February 1884, while his wife was pregnant with their son, Leopold was encouraged by his physician to spend time in the warmer climate of Cannes, France. Just weeks later, while in Cannes, Prince Leopold suffered a fall, injuring his knee and hitting his head. He passed away early the next morning from a combination of a cerebral hemorrhage and a fatal mixture of pain medications.

Prince Rupert of Teck

Prince Rupert was the son of Prince Leopold’s daughter, Princess Alice, Countess of Athlone. Like his grandfather, he had hemophilia. Rupert was a serious and studious young man and attended Eton and Trinity Colleges at Cambridge University. While traveling in Bellevue-sur-Saone, France, Rupert was in a car accident where he suffered a slight skull fracture. Prince Rupert passed away five days later, just a few days before his 21st birthday.

Hemophilia in the royal family did not end with the princes most closely tied to the British Royal Family. Queen Victoria passed the hemophilia gene to two of her four daughters, both of whom gave birth to sons with the bleeding disorder, and one also had two daughters who were carriers.

Germany

Hemophilia found its way to the German Empire with the marriages of Queen Victoria’s daughters, Princess Beatrice of Battenberg and Princess Alice, Grand Duchess, to German suitors. Beatrice had two boys with the condition, Leopold and Maurice. Princess Alice had six children, including one son, Prince Frederick, with hemophilia and two daughters, Princess Irene and Princess Alice, who were carriers of hemophilia. Irene would go on to have two affected sons, Prince Waldemar and Prince Henry.

Prince Leopold Mountbatten

Lord Leopold is the son of Princess Beatrice and Prince Henry of Battenberg. He served in the King’s Royal Rifle Corps, where he attained the rank of Major. Leopold was also a member of the Knights of the Royal Victorian Order and the Knights Grand Cross of the Royal Victorian Order. At age 32, due to repeated bleeding episodes into his hip, Lord Leopold required surgery and passed away during the procedure.

Prince Maurice of Battenberg

Prince Maurice, Leopold’s brother and the youngest son of Beatrice and Henry, was educated at Lockers Park Prep School. He went on to attend the well-known Wellington College. Like his brother, Maurice volunteered in the King’s Royal Rifle Corps. As a Knight Commander of the Royal Victorian Order and a Lieutenant in the rifle corps, Maurice bravely served in World War I. At age 23, he was mortally wounded at the First Battle of Ypres in 1914 and died on the battlefield.

Prince Friedrich of Hesse

Prince Friedrich was born to Princess Alice, daughter of Queen Victoria. Grandson of the queen, Friedrich or ‘Frittie’ as the family often called him, was an active, cheerful child. He was diagnosed with hemophilia in February of 1873 after a cut on his ear bled for three days. Three months later while playing with his younger brother, Frittie climbed onto a chair in his mother’s bedroom to get a better view from a window. After accidentally tipping the chair, he fell through the window. Though he survived the twenty-foot drop, he died hours later from a brain hemorrhage at the tender age of two. Princess Alice never recovered from her loss.

Prince Waldemar of Prussia

Princess Irene of Hess, the daughter of Princess Alice, Grand Duchess, had three children. The oldest and youngest were diagnosed with hemophilia. The family was devastated the “Royal Disease” had shown up in the ruling Prussian family with the birth of their first son, Prince Waldemar of Prussia. Although the condition caused Irene much anxiety, Prince Waldemar lived into his fifties, unlike many of his relatives. He married Princess Calixta of Lippe-Biesterfeld in August 1919, and even though they had a happy marriage, they decided against having children.

Waldemar lived to see a time when treatment for hemophilia saw some improvement. Doctors discovered that an infusion of blood from a healthy patient could help stop the bleeding in people with hemophilia. As such, Waldemar received blood transfusions to control his bleeding episodes. During World War II, he and his wife fled the Russian advance and arrived injured and exhausted in Tutzing, Bavaria, where Waldemar received his last blood transfusion. Not long after arriving in the city, the American Army took control of the area and sent all available medical resources to treat the concentration camp victims. At a medical clinic, but without access to blood transfusions, Waldemar bled internally and passed away.

Prince Heinrich of Prussia

Also born to Princess Irene of Hesse, Prince Heinrich was the youngest brother of Prince Waldemar, and also diagnosed with hemophilia. Heinrich climbed up on a table and fell. Although the fall itself was not all that far, the young boy had fallen headfirst. Just four years old, Heinrich died the following day from the resulting brain hemorrhage. The entire family was shattered.

Russia

Princess Alice, Grand Duchess, had another daughter, Alexandra of Hesse, who married Tsar Nicholas II Romanov of Russia. They would go on to have five children – one of whom would come to be considered the most famous of all the royals affected by hemophilia. Tsarevich Nikolaevich Alexei of Russia was the great-grandson of Queen Victoria.

Tsarevich Nikolaevich Alexei

After having four daughters, it was an extremely joyous occasion for the Romanovs when Alexei was born. Being the first son, Alexei was in line to become the next Tsar and leader of the Russian Empire. As the only male heir to the throne, the family was distraught when after the umbilical cord was cut, his navel continued to bleed for hours, indicating the young prince had hemophilia.

Alexei was very spoiled, prone to mischief, had a temper and was often difficult to control. An extremely active child, he was prohibited from playing too roughly and from activities as riding a bike, playing tennis or horseback riding. He was lonely but for his sisters as he wasn’t often allowed to play with other children. Two Imperial Navy sailors were appointed to watch over and keep him out of trouble, but they were not always able to do so.

As the center of attention in his family, when Alexei felt well, the entire house was happy. When he suffered a bleeding episode, everyone suffered with him. He was prone to spending weeks in bed in severe pain and had suffered many near-death bleeding episodes. Yet, Alexei grew to become a much better-behaved, good-natured, considerate and sensitive young teen.

So severe was Alexei’s hemophilia, Alexandra and Nicholas devoted much of their time and energy to seeing that he was taken care of. They came to rely on the services of Grigori Rasputin, a Russian mystic and self-proclaimed holy man, who was able to help Alexei through his painful bleeding episodes. No one knows exactly how Rasputin was able to mend the young Tsarevich’s bleeding episodes. It is speculated he prevented physicians and caretakers from manipulating Alexei’s body too much and used a combination of hypnosis, herbs, or as some believed, “supernatural healing powers” to ease the boy’s pain.

Alexei’s hemophilia often took his parent’s attention away from governing. Their reliance and close connections with Rasputin spurred much gossip and discontent. The country was already plagued with political and social unrest. A series of bloody revolutions took place that would ultimately put the communist Bolsheviks in power. Arrested in the Russian Revolution of 1917, Alexei and his family were forced to live as captives.

In July of 1918, the family was tragically and systematically executed by the Bolsheviks to ensure a counter-revolution could not rally around the former rulers of Russia. Alexei and his family were eventually canonized as “passion bearers” in the Russian Orthodox Church Abroad. 

The remains of Alexei and one of his sisters, believed to be Maria (although it might have been Anastasia), were discovered in 2007. DNA tests conducted in 2009 revealed that in addition to confirming the factor IX deficiency diagnosis, Maria was a carrier. This correlates with a report that at 15-years old, Maria bled excessively when having her tonsils removed. It is unknown if any of the other sisters were carriers since their remains were incinerated.

Spain

Hemophilia would find its way into the ruling royal Spanish family by Victoria Eugenie of Battenberg, the daughter of Princess Beatrice and granddaughter of Queen Victoria. Victoria Eugenie became the Queen of Spain when she married King Alfonso XIII. Including the heir to the throne, two of their seven children were diagnosed with hemophilia. It was reported that the marriage was unhappy with the king never forgiving his wife for bringing hemophilia into the royal bloodline, and they later separated.

Alfonso, Prince of Asturias

Queen Victoria’s great grandson, Alfonso was born to Victoria Eugenie of Battenberg and her husband King Alfonso XIII. As their first-born son, Alfonso was the heir-apparent to the throne of Spain. It was discovered he had hemophilia at the time of his circumcision. Alfonso and his younger brother, Infante Gonzalo, were fitted with special jackets that were made to help prevent bleeding episodes.

Political upheaval left the Spanish monarchy largely defunct as the country moved to become a republic and in 1931, the monarchy was abolished. In 1933, Alfonso renounced his right to the defunct throne to marry a Cuban commoner having met her at a hospital in Switzerland where he was being treated for his hemophilia. He would later divorce, marry another commoner and divorce again. Alfonso did not have children with either wife.

At age 31, while being driven by a friend in Miami, Florida, the car swerved to avoid a truck and crashed into a telephone booth. Although his injuries were thought to be minor at the time, he suffered fatal internal bleeding and passed away. Initially buried in Miami, Alfonso was re-entombed in 1995 at The Pantheon of the Princes in El Escorial, Spain.

Infante Gonzalo of Spain

Another great-grandson of Queen Victoria, Infante Gonzalo was the youngest child of King Alfonso and Queen Eugenie. The final name in his title included “Mauricio” in honor of Prince Mauricio, his uncle with hemophilia who had been killed in World War I. During his life, it was not widely known that Gonzalo had hemophilia. Though he suffered hemophilia-related health issues, he was an avid sportsman, attended the Catholic University of Leuven to study engineering and held rank as a private in the Spanish Army.

In 1934 while spending the summer holiday in Austria with family, Gonzalo was out for a ride with his sister. To avoid hitting a cyclist, his sister swerved and crashed into a wall. Like his brother, Alfonso, who would perish in a car accident four years later, Gonzalo suffered no visible injuries right after the accident; however, hours later, it was discovered he was experiencing a severe abdominal bleed. Gonzalo passed away just two days later at age 19.

One day, Olga, Tsarevich Alexei’s sister, found the ten-year old prince gazing up at the sky. When she asked what he was doing, he replied, “I like to think and wonder…I enjoy the sun and the beauty of summer as long as I can. Who knows whether one of these days I shall be prevented from doing it.” The royal princes born with The Royal Disease” faced struggles largely unknown to our bleeding disorders community today.

Though the ruling monarchies of Europe often attempted to minimize the appearance of hemophilia in their families to the public, privately, great measures were taken to learn about and treat the bleeding disorder. They commissioned the finest physicians of the time to attend to their children. Increased attention from doctors brought about awareness and new literature regarding hemophilia.

The late 1800s saw a huge increase in the number of publications focused on hemophilia, shedding light and paving the way for future physicians to advance treatment. Though their struggles were great, the status of the princes with hemophilia helped drive research and bring attention to The Royal Disease. Since the death of Prince Alfonso in 1938, there remain no living descendants with hemophilia or known carriers in the royal family.

It is speculated that treatment for hemophilia would not have advanced as quickly were it not for the royal princes who suffered from the condition. Their stories are compelling and prompt us, as young Alexei, to think and wonder…

Home Infusion Steps and Helpful Tips

Even for those very experienced in infusing, there are times when a vein is missed or decides to be more challenging. Here are steps and helpful suggestions for successful infusion.

DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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How One Young Man Made a Difference on World Hemophilia Day

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By Shelia Biljes

World Hemophilia Day

World Hemophilia Day has been celebrated on April 17 every year since 1989 when it was started by the World Federation of Hemophilia (WFH). The date was chosen since it is the birthday of Frank Schnabel, the founder of WFH. The campaign is designed to increase the understanding and awareness of hemophilia and is celebrated by wearing the color red.

Each year, World Hemophilia Day highlights a different theme. The theme this year was Access for All: Prevention of Bleeds as a Global Standard of Care. The theme encourages bleeding disorder community members around the world to advocate at the local and national level. Global priorities include improving treatment access, controlling bleeds, and expanding coverage for prophylactic treatment.

On this special day, I have found that my biggest heroes come in tiny packages! Benjamin, a first grader diagnosed with severe hemophilia B, is an example of why I find this statement so true. He wanted to do something big on World Hemophilia Day to help spread awareness and education of hemophilia.

Benjamin encouraged everyone, students, teachers, and staff, to wear red on World Hemophilia Day. His mom, Stephanie, wrote an amazing description of hemophilia that was posted on the school’s Facebook page along with the invitation to wear red. Benjamin’s devoted big sister, Evelyn, a third grader at the same school, joined in spreading inspiration and education.

Every child who wore red received a pencil and a card that Benjamin and Evelyn worked for hours preparing. It was a big hit! Approximately 300 students showed their support by donning red attire!

Benjamin invited me to the school to celebrate the event with his family, and I met Principal Kelli Corell. My pride for him is overwhelming! Congratulations to this fine young man on his impressive act to advocate, spread awareness, and share information about hemophilia!

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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BioMatrix Specialty Pharmacy Recognized by the National Association for Business Resources with a 2023 Best and Brightest Company to Work For Award

BioMatrix Specialty Pharmacy Recognized by the National Association for Business Resources with a 2023 Best and Brightest Company to Work For Award

Distinction Marks Fifth Consecutive Best and Brightest Award for BioMatrix

Media Contact: Tara Marchese
Corporate Director of Marketing
Tel: 954-908-7636
Email: tara.marchese@biomatrixsprx.com

September 21, 2023 – Plantation, FL - - BioMatrix Specialty Pharmacy announced today the organization has been recognized with a fifth consecutive “Best and Brightest Companies to Work For in the Nation” award. The National Association for Business Resources (NABR) first awarded BioMatrix with the national distinction in 2019, then again in 2020, 2021, 2022, and 2023. The BioMatrix corporate headquarters in South Florida has also been selected four times over as a top-performing employer for the Miami area, receiving recognition every year since the NABR instituted regional distinctions beginning in 2020.  

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BioMatrix competed against 2,700 companies for the “Best and Brightest” distinction. Out of thousands of applicants, only 385 companies were selected to receive honors. Best and Brightest companies are assessed by an independent research firm on a number of key measures and industry benchmarks. BioMatrix scored strongly across categories including compensation, benefits, and employee solutions; employee enrichment, engagement, and retention; employee education and development; recruitment, selection, and orientation; employee achievement and recognition; communication and shared vision; diversity and inclusion; work-life balance; community initiatives; and strategic company performance.

“We are so honored to receive our fifth consecutive Best and Brightest award,” said Diane Schumacher, VP Human Resources. “Our organizational culture is focused on making a positive difference for the patient communities we serve while providing employees with an engaging, more meaningful work experience. Receiving this recognition validates our efforts and demonstrates our commitment to maintaining a positive work environment.”

BioMatrix is a nationwide, independently owned infusion pharmacy serving patients with rare, chronic, and difficult to treat health conditions. The company has been recognized on the INC 5000 list of fastest growing companies in America and carries several industry leading healthcare accreditations. To view current BioMatrix career opportunities visit: https://bit.ly/3JMpAU6

About BioMatrix Specialty Pharmacy
BioMatrix Specialty Pharmacy offers comprehensive, nationwide specialty pharmacy services and digital health technology solutions for patients with chronic, difficult to treat conditions. Our commitment to every patient is to provide individualized pharmacy services, timely access to care, and focused education and support. We offer a tailored approach for a wide range of therapeutic categories, improving health and empowering patients to experience a higher quality of life.

About the Best and Brightest Programs
The Best and Brightest Companies to Work For® competition identifies and honors organizations that display a commitment to excellence in operations and employee enrichment that lead to increased productivity and financial performance. This competition scores potential winners based on regional data of company performance and a set standard across the nation. This national program celebrates those companies that are making better business, creating richer lives and building a stronger community as a whole. There are numerous regional celebrations throughout the country, such as Atlanta, Boston, Chicago, Dallas, Detroit, Grand Rapids, Houston, Milwaukee, San Diego, San Francisco, Miami, New York, Charlotte, Denver, Seattle, Nashville, and Portland. Nominations are now being accepted for all programs. Visit thebestandbrightest.com to nominate your organization.

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Idiopathic Thrombocytopenic Purpura (ITP): Signs, Symptoms, and Treatment Options

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With fewer than 200,000 cases in the U.S. per year1, idiopathic thrombocytopenic purpura (ITP) is a rare, autoimmune disorder in which the body's immune system attacks its platelets—i.e. the cells that help blood clot. ITP is known for purple bruises and/or tiny red and purple dots that appear on the skin that look like a rash.

ITP is more common among young women, people over 60, and in those who have other autoimmune conditions such as rheumatoid arthritis or lupus. Those with an infection like HIV or hepatitis can also be more susceptible to ITP. Children can also have ITP, though it usually occurs directly following a virus such as the mumps or the flu. Children most often have the acute version of ITP (<12 months) while adults tend to have chronic ITP. There is evidence to suggest that ITP could also be a factor for the development of some other diseases.2

Signs and Symptoms

Though ITP may not have any symptoms at all, these symptoms may occur:3

  • Easy bruising

  • Petechiae—bleeding into the skin that looks like a rash made of tiny reddish-purple spots, mostly on the lower legs

  • Purpura—bleeding into the skin that's larger than petechiae 

  • Nosebleeds or bleeding in the gums

  • Blood in urine or stools

  • Abnormally heavy menstrual flow


It’s important to note that bleeding that doesn’t stop is a medical emergency. Also, those with ITP shouldn’t take drugs like aspirin or ibuprofen as these can increase bleeding.

Treatment Options

Whether it be a mild case or more severe, those with ITP need regular platelet checks. Though children with acute ITP typically improve without treatment, most adults will eventually need treatment. First lines of treatment can include steroids as well as an infusion of immune globulin (IG). IG can treat serious bleeding by increasing blood count quickly. Drugs may also be prescribed that increase platelets as well as surgery to remove the spleen.

Helpful Resources

The Platelet Disorder Support Association provides support, education, and assistance programs for patients and their families and/or caretakers. Some of these resources include: 

How BioMatrix Can Help

If you or a loved one has been diagnosed with ITP, it’s important to know that you are not alone. Organizations like the Platelet Disorder Support Association mentioned above can provide a wealth of information and support as well as connect you to others in the community who have experienced the same diagnosis. In addition, your specialty pharmacy can offer individualized support to help manage treatment.

BioMatrix Specialty Pharmacy helps manage the individual needs of patients requiring IG therapy. Knowledgeable pharmacists and care coordination staff guide each patient through the potential medication side effects and, working with the prescribing physician, help manage treatment to reduce the prevalence and severity of symptoms.

The BioMatrix clinical team includes compassionate nurses who have extensive training and experience with rare diseases, infusion therapies, and complex medical conditions. Our nurses work together with patients, caregivers, pharmacists, and prescribers to coordinate the optimal site of care, conduct nursing interventions, and provide patient education.

Learn more about our individualized specialty pharmacy services for patients with ITP and other rare, and ultra-rare diseases.

Insurance Appeal Letter Sample & Template

Have you been denied insurance coverage for much needed treatment? Use this appeal letter template as a guide to help you or a loved one appeal insurance claim denials.

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

References

  1. Michel M. Immune thrombocytopenic purpura: epidemiology and implications for patients. Eur J Haematol Suppl. 2009;82(s71):3-7. doi:10.1111/j.1600-0609.2008.01206.x

  2. Aboud N, Depré F, Salama A. Is Autoimmune Thrombocytopenia Itself the Primary Disease in the Presence of Second Diseases Data from a Long-Term Observation. Transfus Med Hemother. 2017;44(1):23-28. doi:10.1159/000449038

  3. Mayo Clinic. Immune thrombocytopenia (ITP). https://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/symptoms-causes/syc-20352325

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Health Insurance Basics

HMOs, PMOs, step therapy, co-pay accumulator adjustors, pharmacy benefit managers, insurance drug formulary—what do all these terms mean? Even for those with chronic conditions who are no strangers to understanding their health insurance policies, keeping up with the latest terminology can be challenging. Here we’ll examine some terms to be aware of when selecting and using your health insurance plan.

Let’s begin with the basics…

Premium: Fixed amount the patient pays for insurance

Deductible: Fixed amount patient pays before the insurer pays

Copay: Fixed amount the patient pays for certain healthcare services, typically after deductible is met

Coinsurance: Fixed amount, usually a percentage, the patient pays for healthcare services, typically after the deductible is met

Out-of-Pocket Maximum / Limit: The most a patient pays for covered services in a plan year; does not include premiums 

Pharmacy Benefit Manager (PBM): The company that manages prescription drug benefits on behalf of health insurers. 

Prior Authorizations (PA): A cost-control process that requires advance approval for certain health care needs, especially specialty medications. All health plans have different PA rules. With different payer/provider contract negotiations, the rules are also complex and constantly changing.

Insurance Drug Formulary: List of generic and brand-name drugs covered and/or excluded by your health insurance plan.​

Specialty Tiers: Cost-sharing strategy by insurers placing drugs into “tiers”. The tiers are organized by patient payment and drug coverage—tier 1 being the lowest co-payment on the most generic drug and tier 4 being the highest co-payment on the most unique, high-cost drug.

Step Therapy: Also known as a “fail-first” policy, step therapy requires patients to try one ​or more preferred medications ​to treat a condition​. A patient must “fail” medication ​before “stepping up” to another drug​.

Specialty Pharmacy Mandates: Many insurance plans mandate the specialty pharmacy that patients can use.​ Insurers will move injectable and infusion drugs from medical to pharmacy benefit, requiring the drug to be delivered via the plan’s preferred specialty pharmacy. ​If patients experience a service issue with a plan-mandated specialty pharmacy, an appeal can be filed to use the pharmacy of your choice.

Copay Accumulator Adjusters: Insurance-designed policies meant to control a patient’s cost-sharing agreement with the insurer. An insurer will accept the drug manufacturer copay cards towards prescribed drugs but will not apply that amount toward a patient’s out-of-pocket costs. Once the drug copay card’s balance is $0, the out-of-pocket costs will be the patient’s responsibility.

ACA Healthcare Marketplace: Established by the Affordable Care Act (ACA) by the federal government, the ACA Healthcare Marketplace is a platform that offers insurance plans to individuals, families, and small businesses. Its purpose is to extend health insurance coverage to those who would otherwise be uninsured.

The following terms often get confused with one another. Here we examine the definitions of these terms as well as points of clarification.

HMO’s vs PPO’s

An HMO—short for a Health Maintenance Organization—is  a network of doctors, hospitals, and other healthcare providers who agree to provide care and services at a lower rate. Because of this network, patients have fewer choices when it comes to their healthcare providers. Patients may also be required to select a primary care physician who will need to first refer them to a specialist vs choosing to see a specialist without a referral. Benefits of HMOs include:

  • Typically lower premiums

  • Lower out-of-pocket costs

  • Average 2021 out-of-pocket costs were $427/mo and $5124/yr

PPOs on the other hand—short for Preferred Provider Organization—while still providing maximum benefits for using an in-network provider, still provides some coverage for out-of-network providers. PPO’s allow specialist visits without a referral from a primary care physician and typically do not require a primary care physician for the patient at all. The downsides of PPO’s are:

  • Typically higher premiums

  • Higher out-of-pocket costs

  • Average 2021 out-of-pocket costs were $517/mo and $5628/yr

Medicare vs Medicaid

Medicare is a federal program that provides insurance if you are over 65 or under 65 and have a disability or have end-stage renal disease, no matter your income. Medicare does require a person to have worked (usually ten years) and paid into the program.

Medicaid is not an insurance-specific program but is a state and federal public assistance program that provides financial support and health insurance for persons with low incomes, regardless of their age.

You can be dual eligible for Medicaid and Medicare.

When and where can I sign up for Medicare?

Most people sign up for Part A and B at age 65. You may begin the enrollment process 3 months before your 65th birthday. If you are starting your Social Security benefits and are approved, Part A coverage will be granted automatically, but you will have to enroll in Part B by filling out Form CMS-40B.

You can enroll in Medicare by visiting Social Security and signing up online at www.ssa.gov/benefits/medicare/. You can also enroll by calling Social Security at 1-800-772-1213. 

For persons under 65, everyone eligible for Social Security Disability Insurance (SSDI) is also eligible for Medicare 24 months after being awarded disability benefit entitlement. 

Thereafter, the general enrollment period and when changes may be made to plans is Jan. 1 – March 31 every year. 

Medicare is a complicated program with many rules and sub-rules. If you have more specific questions, please reach out to BioMatrix. Here are some additional articles on Medicare eligibility, coverage, coverage gaps, and resources:

Understanding Medicare Eligibility

Understanding Medicare Coverage

Understanding Medicare Coverage Gaps

Medicare Coverage Resources

To investigate Medicaid eligibility this government resource may be helpful: https://www.medicaid.gov/medicaid/eligibility/index.html

Here is a list of and contact info for all state Medicaid plans:
https://www.medicaidplanningassistance.org/state-medicaid-resources/

Medical vs. Pharmacy Benefits

Plans divide claim payments into either Medical or Pharmacy Benefits. Pharmacy contains most drug benefits. Medical contains the rest, which includes labs, tests, procedures, physician visits, and other non-prescription drug costs. Medical benefits, however, often contain injectables, which in some plans includes infusion products for IVIG and medication used to treat bleeding disorders. 

Medical Benefits:

  • Handles about 50% of specialty drugs, esp. injectables requiring healthcare professional​

  • Has no PBM​

  • Copayment can change with different vial sizes

Pharmacy Benefits:

  • Handles 50% of specialty drugs, especially drugs that can be self-administered​

  • Has a PBM​

  • Copayment can change with changes in number of vials or units on some meds​

  • Cost-sharing is typically higher than medical benefit

Private Employer vs. Individual Health Plans

Per the Affordable Care Act (ACA), employees have the right to choose between insurance offered from a private employer or an individual health plan. 

Private Employer Advantages:

  • Employer researches and purchases plan​

  • Employer shares cost of premiums with you​

  • Premium contributions are not subject to federal taxes and your contributions can be made pre-tax, lowering your taxable income

Individual Advantages:

  • You choose plan and provider networks​

  • Your plan is not tied to your job, so you can change jobs without losing coverage​

  • You may be eligible for a subsidy to help pay for insurance, if you enroll in a plan offered through the ACA/marketplace

HSA vs HRA

An HSA (Health Savings Account) is an individually-funded health savings account used in conjunction with high-deductible plans that allows individuals to save money tax-free against medical expenses. With an HSA:

  • Money comes directly from your paycheck before taxes and is owned by individual​

  • Money may be withdrawn at any time to pay for medical expenses, including those of spouse and other family members. It is an actual account​.

  • Funds roll over year to year​

  • 2023 contribution limits are $3850/$7750. Over 55 can add $1000.​

  • Money cannot be used to pay for premiums​

  • HSA must be used with a high deductible health plan (HDHP​)

  • HSA is not the same as FSA (Flexible Spending Account)

An HRA (Health Reimbursement Arrangement) is an employer-funded account that helps employees pay for qualified medical expenses. With an HRA:

  • Money comes from employer and is owned by employer​

  • Expenses must be substantiated and are accessed with a payment card or online portal reimbursement request​

  • Funds are rolled over or forfeited based on employer rules​

  • HRA (limited purpose HRA) 2023 funding limits are $1950

  • QSEHRA (Qualified Self-Employer HRA) 2023 funding limits are $5850/$11,800 (small-employer). 

  • ICHRA (Individual Coverage HRA) does not have a cap limit.​

  • HRA can be used to pay for premiums​

  • There’s no plan restrictions—can be used with all plans

Claim Types and Appeals

No matter the reason for a denied claim, as the insured, you have the right to appeal. The following are the types of insurance claims that can be made along with how long the insurance company has to respond to an appeal made by the patient and/or provider to a claim denial.

Urgent: Type of pre-service claim that requires a quick decision because your health would be threatened if the plan took the normal time. The insurance company has to either approve or deny the claim within 72 hours and has to respond to a claim appeal also within 72 hours.

Pre-Service Claim: Requests for approval of whether a procedure or treatment is medically necessary. The insurance company has to either approve or deny the claim within 15 days and has to respond to a claim appeal within 30 days.

Post-Service Claim: These include all other claims, especially those after procedure or treatment has been provided. The insurance company has to either approve or deny the claim within 60 hours and has to respond to a claim appeal within 60 days.

Insurance Appeal Letter Sample & Template

Have you been denied insurance coverage for much needed treatment? Use this appeal letter template as a guide to help you or a loved one appeal insurance claim denials.

BioMatrix Specialty Pharmacy can also help break down barriers to care and cut red tape by:

  • Conducting a thorough benefits investigation on your behalf ​

  • Providing a detailed outline of coverage specific to your therapy, including whether it is covered under the medical or pharmacy benefit and if a prior authorization is required ​

  • Outlining financial responsibility for prescribed therapy and referring to appropriate financial assistance programs ​

  • Identifying specialty pharmacy service providers available under your plan ​

  • Providing support for timely prior-authorization and appeals 

Financial Resource Guide

Living with a chronic condition can create additional healthcare costs while also impeding one’s ability to work. Our financial resource guide can help. 

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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Transitioning: The Independence of Self-Infusion

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Transitioning from parent-assisted or clinical infusion to self-infusion can be a significant step toward independence for patients with a bleeding disorder. Self-infusing may help patients feel more in control of their bleeding disorder.

Some things to consider when transitioning are:

  • Age and maturity

  • Motor skills

  • Training 

Age and Maturity 

Some children begin to practice infusing (or assisting in the infusion process) as early as kindergarten. Most children can help with “pushing their factor” and can often tape the gauze on the infusion site by school age. Consider finding ways to have your child participate in the infusion process. As the child grows older, allow them to be more involved in the process and play a bigger role in the infusion. 

By the end of elementary school, it is ideal to have your child fully assisting in the process. Many children at this age can identify an appropriate vein for infusing and may also be ready to participate with the venipuncture. By middle school, it is beneficial for your child to be able to perform the self-infusion, whether under supervision or independently.

Motor Skills

Not all children develop equivalent fine motor skills at the same time. Your child’s ability to self-infuse very much depends on their fine motor skills. Typically by middle school, children can be trained to use a tourniquet, use an alcohol wipe to clean the infusion area, hold gauze, and apply tape or a bandage. Using a needle to infuse intravenously is a fine motor skill requiring training and practice. Encourage your child to practice under supervision. Treatment centers, bleeding disorder organizations, healthcare companies, and specialty pharmacies often hold self-infusion clinics or learning sessions. Encourage participation in such medically supervised events as it facilitates the self-infusion process under proper guidance.

Training

Whether for an adult or a child, self-infusion training should be conducted by a medical professional. There are many progressive ideas and helpful hints to help a person excel at infusing a loved one or self-infusion. As one becomes more adept at performing an infusion, preferences and techniques will develop. Be sure to practice safely, use caution, and follow your medical provider’s recommendations.

Home Infusion Steps and Helpful Tips

Even those very experienced in self-infusion sometimes miss a vein. For those living with a bleeding disorder on factor replacement therapy, this 3-page guide provides steps for successful home infusion. The guide also provides helpful tips for infusing a child.

Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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Transitioning to the Care of Another: A Guide to Help Transition Your Child to the Care of Another

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Parents of children with a bleeding disorder may feel tethered to their child. It can be exhausting trying to explain all the details needed to care for them to another person. Because of this, some parents feel they can never leave their child’s side or that no one else can provide proper care for him or her. Lack of trust in others and feelings of being trapped can often take a toll, creating a significant amount of tension for families.

Transitioning the care of your child to another person (family member, babysitter, daycare, etc.) may cause stress if you’re not fully prepared. However, if you plan ahead and set an action plan in motion, a smooth and safe transition can take place, which may result in reduced stress!

Based on experiences from members of the bleeding disorders community, using these steps as a resource may help reduce stress during transition.

Steps for Transition

  1. Assess needs

  2. Review treatment plans and medical scenarios—train your caregiver

  3. Understand when hovering is too much

Assess needs

If your child is recently diagnosed with a bleeding disorder, review with your HTC or clinician his or her potential needs. Some items to consider:

  • Does your child wear a helmet or other protective gear?

  • Is your child limited in his/her physical ability?

  • Are you able to treat your child before leaving him/her in the care of another or will the caregiver need to administer medication?

  • Are there restrictions to what your child can or cannot do while in care of another?

A family offers this example: “My daughter uses factor weekly, and I administer it prior to her being in the care of another. Although she doesn’t have physical limitations, when leaving her in the care of another, I do not want her wrestling, playing contact sports, etc. I still leave my caregiver with a treatment plan scenario just in case!”

Review Treatment Plans

Depending on your child’s severity, your treatment plan scenario may be adjusted. 

Examples of what to include:

  • What to do in the case of a bloody nose

  • What to do if the child falls

  • What to do if the child hits their head

With each of these potential events, have a scenario planned, which almost always includes calling the parent and using RICE (Rest, Ice, Compress, and Elevate).

Parents of a more severely affected child may need to train their caregiver in the administration of factor if their dosing calls for more frequent treatment. In this case, ask a couple caregivers to consider going through the “self-infusion” protocol to learn how to administer your child’s medication.

Understand When Hovering Is Too Much

“What?! I’m a hemo-parent, there is no such thing as too much hovering!” some parents will say. While many parents may identify with this, there is such a thing as too much hovering. Over time, trust builds as you leave your child in the care of another. Though it may be tough at first, hopefully you will eventually feel you can release your anxieties and stop calling the sitter every half hour. After realizing your caregiver follows your instructions and protocols as well as checks-in with you regularly, your anxieties will likely lessen. When you’re able to control the hovering, your child may begin to understand his or her condition is manageable. Your child may also feel less stress and fear—what a wonderful thought that is!

A mom shares, “I’ll confess that my hovering is sporadic. I hover right after a major-medical incident, and I hover during transition (to elementary school, to self-infusion, to high school, and even to college).”

Though as concerned parents we may have an inclination to hover, it’s emotionally and mentally beneficial to parents and children to recognize the tendency and control the urge.

Home Infusion Steps and Helpful Tips

Even those very experienced in self-infusion sometimes miss a vein. For those living with a bleeding disorder on factor replacement therapy, this 3-page guide provides steps for successful home infusion. The guide also provides helpful tips for infusing a child.

Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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Transitioning: The High School Know-How—A Guide to Help Your Child Transition to High School

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The transition to high school is a nerve-wracking time for most teens. New school, new schedule, new teachers, and new friends may create anxiety and nervousness for both students and parents. When you add a bleeding disorder into the mix, it can be downright frightening—if you’re not prepared! This article will help ensure proper steps are being taken to help your child with a bleeding disorder transition to school with ease.

  1. Contact the School Counselor

  2. Continue or Establish a 504 Plan

  3. Contact the School Nurse

  4. Discussion or In-service with School Personnel

Whether you communicate with the various school personnel by phone, email, or face-to-face, be sure to document your discussions in writing. Keep a log of meetings with dates, times, subject matter, and results of meetings for future references.

1. Contact the School Counselor

Speak with the school counselor to discuss the potential impact your student’s medical condition and anticipated absences may have on their education. Discuss how past absences have affected your child and what can be done to minimize the effects. If your child has a 504 Plan, include modifications pertaining to multiple classes, and make sure all teachers are made aware.

2. Continue or Implement a 504 Plan

If a 504 Plan is not yet in place, establish a plan to address absences, makeup work, the inclusion of extra time to compensate for missed instruction related to illness, extra travel time between classes when needed, and any additional educational accommodations required. Your child’s doctor’s office should be able to fill out the medical paperwork needed to initiate the 504 Plan. It is important to consider implementing a 504 Plan regardless of whether your child ever actually needs the accommodations.

3. Contact the School Nurse

Contact the school nurse to discuss your child’s medical condition. Provide the school a letter (written on letterhead) from the child’s physician or medical team explaining the following:

  • Medical condition

  • Medication and ancillary storage needs

  • Instructions for care

  • Infusion protocol, if the child is to self-infuse
    at school

  • Emergency protocol, including whom to contact

If infusing at school, discuss with the nurse where your child can infuse and what assistance they may need.

Keep in mind not all nurses are familiar with infusion protocol, so it is important to review the steps with them in advance.

4. In-Person Discussion with School Personnel

Accommodations will vary from student to student and as each individual student Invite all school personnel who may interact with your child including teachers, counselor, nurse, administrators, etc. Discuss your desired plans for various scenarios, including bleed protocol. Inform those involved of what to do should a medical situation or medical emergency arise. Explain the need for your child to have freedom of action should he or she deem necessary.

Home Infusion Steps and Helpful Tips

Even those very experienced in self-infusion sometimes miss a vein. For those living with a bleeding disorder on factor replacement therapy, this 3-page guide provides steps for successful home infusion. The guide also provides helpful tips for infusing a child.

Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

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Educational Series: 504 Plans

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Plain and simple… all children deserve, and in our country, are entitled to an education. As part of a child’s right to an education, public schools are required by law to meet the needs of every child, including children with special needs. A 504 Plan helps support a child’s educational needs.

The difficulties of living with a chronic, rare, life-threatening disease or disorder are troubling enough without having to worry about its influence on education. Having a plan in place ahead of time can reduce challenges that may negatively impact a child’s education. The purpose of this educational series is to provide an overview of the 504 Plan and share information on its importance, function, and implementation.

What is a 504 Plan?

A 504 Plan is in reference to section 504 of the federal Rehabilitation Act of 1973. It is a federal anti-discrimination civil rights statute specifically stating no person with a disability can be excluded from participating in federally funded programs or activities including elementary, secondary, or post-secondary education; specifically, “…any person who has a physical or mental impairment which substantially limits one or more major life activities, has a record of such an impairment, or is regarded as having such an impairment.” A 504 Plan details the modifications necessary for students to have the opportunity to perform at the same level as their non-affected peers. 

A 504 Plan may be useful for a child with a bleeding disorder as it can provide modifications for occupational therapy, physical education, and playground time, especially during bleeding episodes or other issues individual to each child. Typically, 504 Plans are used when a child does not have a learning impairment, i.e. autism, Asperger’s syndrome, dyslexia, attention deficit hyperactivity disorder, or other difficulty that impedes learning.

Implementing and Renewing a 504 Plan

A 504 Plan should be implemented before a child enters the public school system or within a few weeks, but can be initiated at any time. A full evaluation should take place a minimum of every 3 years or when a significant change has taken place (i.e. entering middle or high school). While nothing determines the termination date of a 504 Plan, it is very important to review it annually even if the child has not used the safeguard modifications included. Reviewing it annually with school personnel ensures accommodations will continue without having to begin the entire process again.

Even if a student has an accommodating teacher or attends a school a parent is sure will do “what is right” for the child, it is advised that a 504 Plan still be put into place as a safeguard. 

Often, public colleges and universities honor existing Section 504 Plan accommodations. The Disability Resource Center at institutions of higher learning will use these recommendations to help affected students set in place safeguards for their education, especially as it pertains to absences when taking “for credit” classes. 

504 Plan Qualifications

A qualifying student would be age 3 to 22, with an impairment, whether obvious or not, that may have been caused by illness, injury, communicable diseases, chronic or life-threatening illness, learning impairment, or disability who are entitled to educational support under the Individuals with Disabilities Education Act (IDEA) of 1973 (modified into ADA). Qualifying diseases are not listed—only that a physical and/or mental disability limiting one or more of life’s major activities may qualify a child. 

School personnel will review a variety of sources to make a determination, which may include teacher reports, school administered tests, past grades, attendance records, medical reports, observation, and information from parents. 504 Plans are enforceable only at public education institutes, but other institutes may choose to abide by the guidelines and accommodations as well. 

Accommodations 

Accommodations will vary from student to student and as each individual student progresses through the grades. As much as possible, the child will be kept in regular classrooms rather than in a special class.

Common accommodations include: 

  • Extended time on tests, assignments, and post absence make-up work 

  • Class notes to be provided post-absence

  • Home services/supplements if the absences extend beyond 2 consecutive school days

  • Visual, verbal, or technology aids 

  • Extra travel time between classes

  • Extra set of text books for home use

  • Adjusted class schedule, grading, and homework requirements 

  • Preferential seating 

  • Adjustments to physical education class, elective school sports, and playground time 

  • Occupational or physical therapy

504 Plan Referral

A referral is all that is needed to establish a 504 Plan. In most states, a referral directly from a parent is acceptable; however, for a smoother process, obtain referral or recommendation notes from the child’s doctor, nurse, or clinician whenever possible. Typically, the referral is provided to the school counselor, but may also be submitted to the school nurse or child’s teacher. Medical documentation is not always needed, but prepare to share the following information:

  • Diagnosis

  • Schedule of doctor visits and any hospitalizations in the past year

  • School attendance records for the past year

  • A list of potential or foreseeable issues

  • A list of requested accommodations

Home Infusion Steps and Helpful Tips

Even those very experienced in self-infusion sometimes miss a vein. For those living with a bleeding disorder on factor replacement therapy, this 3-page guide provides steps for successful home infusion. The guide also provides helpful tips for infusing a child.

Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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Asesoramiento del Paciente en el Área de Farmacia de Especialidades

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By Shelby Smoak, Ph.D. & Justin Lindhorst, MBA

La comunidad de trastornos sanguíneos ha soportado durante mucho tiempo desafíos relacionados con el sistema de salud. Al asistir a la universidad a principio de la década de los 2000, obtuve mi primera póliza de seguro médico privada ofrecida a los estudiantes que asisten a la universidad. Después de intentar ordenar factor, me contactaron y me dijeron que mi póliza incluía exclusiones por condiciones preexistentes y que tendría que esperar un año antes de que el plan cubriera mi medicamento.

Después de un año agotador de pasar por muchos obstáculos para mantener el acceso a los medicamentos que me salvaron la vida, finalmente hice mi primer pedido de factor a través de mi compañía de seguros. Seis meses después de eso, llegué al "máximo de por vida" del plan y me vi obligado a buscar cobertura en otro lugar. Antes de la aprobación de la Ley del Cuidado de Salud a Bajo Precio, el máximo por vida y las exclusiones por condiciones preexistentes eran algunos de los principales obstáculos relacionados con el sistema de salud que experimentaban los miembros de la comunidad de trastornos sanguíneos. Hoy en día, la terapia escalonada, los acumuladores de copagos y los altos gastos por cuenta propia amenazan o retrasan nuestro acceso a las terapias prescritas. El hecho es que las personas con condiciones de salud crónicas, como la hemofilia y la VWD, enfrentan una variedad de desafíos al navegar por nuestro fragmentado sistema de atención médica. Los programas de asesoramiento del paciente pueden ayudar.

Patient navigation has been defined as, “Individualized assistance offered to patients, families, and caregivers to help overcome health care system barriers and facilitate timely access to quality health and psychosocial care.”1 Patient Navigators are peer, non-medical, and medical professionals who assist patients to coordinate support across the health system which can include education, removing financial and other barriers to care, assisting with insurance coverage, facilitating access to community resources, and providing emotional support.2 Research indicates patient navigation services using peer, medical, or non-medical staff are effective at resolving health-system barriers and result in improved outcomes and increased patient satisfaction.3

Within the last decades, our understanding around the positive impacts of patient navigation programs has grown. Witnessing the various forms it can take and the many different professionals who give patient navigation a voice, patient navigation continues to be a sound way to close the gaps in healthcare access and, as researchers in Cancer put it, “a strategy to improve outcomes.”4 The goal of patient navigation has remained steadfast: “to facilitate timely access for all [emphasis added] to quality standard care in a culturally sensitive manner.”5

The reality for patients is that accessing prescribed specialty therapy is challenging. Given that eighty-two percent of surveyed patients reported delays in accessing meds, a clear problem exists.6 Over half of pharmacists surveyed indicated spending 1-2 hours with patients, especially when it involves complex medications.7 An article in Journal of the National Medical Association calculated an even higher average of 2.5 hours per patient spent helping individuals reduce barriers to care.8 Today, chief among these delays are insurance issues and costs associated with medications. Pharmacies have observed these obstacles and witnessed the fragmentation of the healthcare system into compartments that do not always work well together. To reduce disruptions in treatment access, specialty pharmacies like BioMatrix are embracing patient navigation as the next evolution in high touch patient care.

Sometimes a little emotional support can go a long way. Emotional support provided by patient navigators can bolster patients as they overcome barriers. Relationship-building thus forms another root in the success of patient navigation programs. As one researcher notes, relationships between patient and navigator influenced the outcome, adding, “The process of [patient navigation] has at its core relationship-building and instrumental assistance.”9 The success of patient navigation is shown to also depend upon the people involved. A study which examined a broad mix of patient navigation programs concluded, “The type of navigator used was not found to affect patient outcomes.” The programs studied utilized lay persons, nurses, clinicians, and physicians and indicated that the ability at relationship-building was the key factor for a patient’s success. “A common theme in each of these studies,” the authors write, “was the need for emotional or social support from the navigator.10

Patient navigation programs have proven themselves as a gateway to improved outcomes. Patients are also being more proactive and seeking avenues to gain the access to care; ninety percent of those surveyed said exactly that.11 BioMatrix has assembled a team of caring experts with years of bleeding disorder specific experience in insurance processing, social work, and education to help patients successfully resolve health system, nonclinical barriers to care. These services are offered at no cost and are available to any member of the bleeding disorder community regardless of product, pharmacy affiliation, or insurance coverage. We welcome patients to contact us so we can work together to reduce and overcome barriers to care.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

References

  1. Blackley, K., Burriss, H., Cantril, C., Kline R., Pratt-Chapman M., Rocque G., Rohan, E., Shulman, L. (2019). Patient navigation in cancer: The business case to support clinical needs. Journal of Oncology Practice. 15,11 585-590. DOI: 10.1200/JOP.19.00230

  2. McBrien KA., Ivers N., Barnieh L., Bailey JJ., Lorenzetti DL., Nicholas D., Tonelli M., Hemmelgarn B., Lewanczuk R., Edwards A., Braun T., Manns B. (2018). Patient navigators for people with chronic disease: A systematic review. PLoS One. 2018 Feb 20;13(2):e0191980. DOI: 10.1371/journal.pone.0191980.

  3. Meade CD., Wells KJ., Arevalo M, Calcano ER., Rivera M, Sarmiento Y., Freeman HP., Roetzheim RG. Lay navigator model for impacting cancer health disparities. (2014). Journal of Cancer Education. 2014 Sep;29(3):449-57. doi: 10.1007/s13187-014-0640-z.

  4. Freedman, Harold M., and Rian L. Rodriguez. “History and Principles of Patient Navigation.” Cancer. 10 July 2011. https://acsjournals.onlinelibrary.wiley.com/doi/full/10.1002/cncr.26262

  5. Freeman, Harold M. “The Origin, Evolution, and Principles of Patient Navigation.” Cancer, Epidemiology, Biomarkers, and Prevention. 21.10 (2012). https://aacrjournals.org/cebp/article/21/10/1614/69026/The-Origin-Evolution-and-Principles-of-Patient

  6. Cover My Meds. “2022 Medication Access Guide.” PDF

  7. IBID.

  8. Lin, Chyongchiou J., et. al. “Factors Associated with Patient Navigators’ Time Spent on Reducing Barriers to Cancer Treatment.” Journal of the National Medical Association. 110.11 (2008). https://www.sciencedirect.com/science/article/abs/pii/S0027968415315078

  9. Jean-Pierre, Pascal., et al. “Understanding the Processes of Patient Navigation to Reduce Disparities in Cancer Care: Perspectives of Trained Patient Navigators From the Field.” Journal of Cancer Education. April 2010. https://link.springer.com/article/10.1007/s13187-010-0122-x

  10. McVay, Sheri., et. al. “The Effect of Different Types of Navigators on Patient Outcomes.” Journal of Oncology. April 2014. https://www.jons-online.com/jons-categories?view=article&artid=3665:the-effect-of-different-types-of-navigators-on-patient-outcomes&catid=18

  11. Cover My Meds. “2022 Medication Access Guide.” PDF

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The College Send-Off: A Guide for a Smoother Transition

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You have raised your child to adulthood, helped them through school, and now are preparing them for college. You helped with application and admissions, bought all the dorm room supplies, and set them up on a dining plan.

You feel confident you prepared them to manage their bleeding disorder. They’re ready for an independent life, but are they really ready? Do you both know where their medication will be shipped, or where to dispose of supplies post infusion? What happens if a medical incident prevents attendance in a credit-bearing class with a mandatory attendance rule? Does the school have parking options if the child has mobility issues? Even the most prepared parents might need an overview of some of the things to prepare for when sending your child with a bleeding disorder off to college.

1. Contact the Hemophilia Treatment Center, Hematologist or Physician

Ask the physician for a letter explaining your child’s medical condition and its potential impact on education. The note should also explain that due to the patient’s condition, medication must be kept readily on hand and in some cases, at a controlled temperature. The student may need use of a refrigerator in their dorm room for the sole purpose of storing medical products.

2. Contact Student Housing (On Campus Housing)

Contact the student housing manager to let them know that a student with a chronic medical condition is coming to live on campus. Ask what documentation needs to be presented to allow the student to keep medication and supplies on hand. Be certain you document (via email or fax) the housing manager with whom you spoke. Be sure to follow up 30 days prior to the start of school and within a day or two of the student moving into the dorms. 

3. Contact the Student Health Center

The providers at the Student Health Center will be the first line of defense in a medical situation. A basic bump, bruise, slip, or fall may not be a big deal to other students, but may present a bigger problem for a student with a bleeding disorder. By contacting the Student Health Center, you can provide an overview of bleeding disorders and protocols as it pertains to your student’s bleeding disorder.

4. Contact the Surrounding Medical Providers 

Locate healthcare providers near campus that may have some experience with bleeding disorders. Contact the identified providers ahead of time to make introductions and familiarize them with your student’s history and bleeding disorder needs.

5. Contact Shipping and Receiving 

Contact campus shipping and receiving for their policies and procedures for receiving packages on campus. Identify the process for your student’s campus, and request modifications for medication deliveries, if needed.

6. Work with the HTC or Hematologist and Partner with Industry for an In-Service

When a student goes to college, they are separated from their customary support system. They no longer have someone who has been trained to support, help find the vein, or assist in mixing their dose when needed. It’s important for the student to find a person they’re comfortable disclosing their medical condition with and to develop a new support system. Often, HTCs or homecare and specialty pharmacies can conduct a short in-service to teach bleeding disorder basics and the role of a patient’s support system. Once the student determines with whom they’re comfortable disclosing their condition, it might help to schedule a session.

7. Does Your Child Have Educational Accommodations (504 Plan)?

A 504 Plan for health impairment is enforceable in federally funded educational settings for students, ages 3-22. If your student had a 504 Plan for their bleeding disorder in high school, it can most likely be implemented in college, especially if they attend a state college or university. Don’t wait until absences have caused them to drop or fail a class. Schedule a meeting with the school’s Disability Resource Center (DRC) to discuss the student’s current 504 Plan.

Home Infusion Steps and Helpful Tips

Even those very experienced in self-infusion sometimes miss a vein. For those living with a bleeding disorder on factor replacement therapy, this 3-page guide provides steps for successful home infusion. The guide also provides helpful tips for infusing a child.

Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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Transitioning: Heading to School—A Guide to Help Transition Your Child to School

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The transition to school for any parent may be a stressful time. For a parent of a child with a bleeding disorder, the stress and challenges are multiplied. This guide was created to help families avoid potential obstacles and create a school environment where their child with a bleeding disorder can excel.

  1. Have a Medical Plan in Place

  2. Meet with the School Nurse

  3. Contact the School Counselor

  4. Implement a 504 Plan

  5. Meet with Educators and Administrators

  6. Advocate for Your Child

1. Have a Medical Plan in Place

Having a medical plan in place can help the school nurses and teachers care for your child and keep him or her safe. Nose bleeds, bruising, hard bumps and falls, and head injuries are a few of the issues that may need to be addressed throughout the school year. Your child’s medical plan should include details such as who to contact and procedures for each incident. For example, Johnny falls on the playground hitting his knee, resulting in bruising. Protocol may include sending the child to the school nurse for evaluation (accompanied by another student or adult), immediately implementing RICE (rest, ice, compression, and elevation of the impacted area), calling the parents, and potentially initiating an infusion (if the student can self-infuse). Medical plans and procedures should be reviewed in person with the school staff and modified as often as needed, both verbally and in writing.

2. Meet with the School Nurse

Prior to meeting with the school nurse, obtain an official letter from your child’s physician or treatment center. The document should be on official letterhead and signed by the physician or member of the child’s medical team. Contents should include treatment protocol, emergency contact phone numbers, specific instructions regarding the child’s care, storage instructions for an emergency dose of factor, all needed ancillaries, a list of additional medications, and storage requirements. Provide a treatment protocol including whether the child is to self-infuse.

Arrange to meet with the school nurse to review the physician’s treatment protocol. Provide a “kit” and package all needed items together. The kit can then be quickly accessed in the event of an emergency at school.

3. Contact the School Counselor

Arrange a meeting to discuss your child’s bleeding disorder relative to school performance and emotional well-being with the school counselor or psychologist. The discussion should include how to treat bleeding episodes, chronic or episodic pain, class tardiness, or how being absent may impact his or her education. Discuss initiating a 504 Plan for the student, if one is not already in place.

4. Implement a 504 Plan

“A 504 Plan is a plan developed to ensure a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment.”*

A 504 is available to students, ages 3-22, who attend a school that receives federal funding (i.e. public school, universities, and colleges) and who has one or more life activities impacted by a qualifying health impairment. Physicians and parents alike may refer their child for a 504 evaluation. The child’s physician or medical team is required to submit medical forms verifying the student’s condition is considered chronic, qualifying him or her for a 504. Include specifics in the 504 such as how excess absences will be handled, the inclusion of extra time allocated to compensate for missed instruction, missed class work and homework, copies of notes, extra textbooks, as well as additional educational accommodations needed. 

Do not hesitate to put a 504 in place for your child. The 504 protects the student’s educational integrity given their medical condition. This does not categorize your child as “special education student” rather it protects his or her educational interest under similar protections from the Office of Civil Rights and specifically the American’s with Disabilities Amendment Act. Even if your child NEVER uses the 504 accommodations, it is best to repeatedly renew annually to avoid any disruption in the documentation process should your child ever need the accommodations.

5. Meet with Educators and Administrators

Request a meeting with all persons who will interact with your child to discuss your desired plans for various scenarios. All steps and protocols should be discussed in a face-to-face meeting as well as documented in writing. Be sure to keep a log of meetings for reference.

6. Advocate for Your Child

Sending your child to school can be a nerve-wracking event. Being prepared can help alleviate the anxiety and stress of this step in your child’s life. Please use this document as guidance for preparedness. You are your child’s best advocate; however, if you find yourself in need of assistance or information, please feel free to reach out and ask questions! We are with you every step of
the way!

Home Infusion Steps and Helpful Tips

Even those very experienced in self-infusion sometimes miss a vein. For those living with a bleeding disorder on factor replacement therapy, this 3-page guide provides steps for successful home infusion. The guide also provides helpful tips for infusing a child.

Patient Navigation Program

Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

*Source for 504 Plan can be found at: http://www.washington.edu/doit/what-difference-between-iep-and-504-plan.  Site accessed on 5/31/17.

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