Bleeding Disorders

NHF Washington Days Advocating on the Hill


Advocates in the bleeding disorders community descended upon our nation’s capital March 8–10 to create awareness and press for better legislation against copay accumulator adjustors. This was part of the National Hemophilia Foundation’s Washington Days, an event which had stalled during COVID and was virtual in 2022. This was the first full return of face-to-face advocacy with Congress in several years.


A top advocacy issue this year involved asking House Members to cosponsor H.R. 830, the HELP Copays Act. This act would require all copays (regardless of who contributes) to count towards a person’s out-of-pocket maximum. Sixteen states and Puerto Rico currently have laws restricting an insurer’s use of a copay accumulator adjustor, a policy where dollars provided by a third-party source (such as a manufacturer drug copay card) do not apply toward a patient’s out-of-pocket amount. However, those laws only protect patients on those state’s plans. The legislation would offer protection for people on employer–sponsored retirement and health plans, also known as ERISA plans, or large group plans.

Another advocacy issue included asking for continued funding of programs supported through NIH, CDC, and HRSA. NIH (The National Institutes of Health) is currently investigating the rise of inhibitors within the bleeding disorders community; the CDC (Centers for Disease Control and Prevention) provides funding to HTCs (Hemophilia Treatment Centers) for outreach and education; and HRSA (Health Resources and Services Administration) supports ancillary services within the HTC setting like physical therapy and social work. A reduction of these funds would negatively impact the current level of care persons with a bleeding disorder receive and would have consequences in the future as inhibitors and other issues become understudied.

After NHF training and a role-playing exercise to demonstrate the “Do’s and Don’ts” of meeting with elected officials, the advocates felt prepared. The Advocacy Day began with a speech from Representative Earl “Buddy” Carter (R-GA-01) who is sponsoring H.R. 830, the bill the group was there to support. With his words of encouragement, the advocates headed out to descend upon the Capitol and meet with elected officials. Several BioMatrix members were there to support the advocacy efforts.

Richard Vogel with Team New Jersey was busy with five Congressional meetings. Starting with a visit to the office of Senator Robert Menendez (D-NJ), advocates seamlessly interwove their stories into a cohesive narrative which started with the younger generation, moved on to women with bleeding disorders, and then concluded with those who have reached retirement age. New Jersey was fortunate to have with them for their advocacy Stephanie Lapidow, Executive Director and Amy LaPorta, Office Manager of Hemophilia Association of New Jersey.

Senator Menendez has been very supportive of bleeding disorder issues in the past; he sponsored the Hemophilia Skilled Nursing Facilities Access Act (H.R. 5952, 116th Congress). Team New Jersey is hopeful he will introduce the companion legislation to the HELP Copays Act in the Senate, another bipartisan bill.

The team next went to the office of Senator Cory Booker (D-NJ). On the House side, the team met with Representatives Josh Gottheimer (D-NJ 05), Mikie Sherrill (D-NJ-11), and Bonnie Watson-Coleman (D-NJ-12), the latter already a cosponsor of H.R. 830. In their offices, the legislative aides expressed empathy and interest in supporting the cause.

For the full Capitol experience, the team was lucky enough to get passes to the House Gallery where they were able to watch democracy in action.

Shelby Smoak attended as an advocate for Virginia. He and Brenda Bordelon, fellow constituent and Chapter Director of Hemophilia Association of the Capitol Area, met with Representative Ben Cline (R-VA-06). The meeting was spirited, and Representative Cline seemed especially interested in H.R. 830 and the CDC funding, the latter of direct importance since he sits on the House Appropriations Committee which is responsible for making funding determinations.

Representatives Rob Wittman (R-VA-01) and Morgan Griffith (R-VA-09) made time for staff to hear stories from the community and were asked to support our cause. On the Senate side, the offices of both Virginia Senators Tim Kaine (D-VA) and Mark Warner (D-VA) were receptive to the financial burdens endured by the community as explained by our group. They both took pride in being Senators from the state which was the very first to pass a copay accumulator ban.

Felix Jaquez Garcia from New Mexico, teamed up with members from Puerto Rico to support them at their meeting with Representative Jenniffer González-Colón (R) of Puerto Rico. She was very receptive and immediately jumped in to work with the Puerto Rico chapter to protect access to HTCs.

In his meeting with Senator Ben Ray Luján’s (D-NM) staff, Felix was optimistic the Senator would sign on as a cosponsor to ban copay accumulators should a bill be introduced. Felix also connected with the staffer from Senator Heinrich’s (D-NM) office, who also was willing to support a copay accumulator ban.

In the office of Representative Gabriel Vasquez (D-NM-02), the meeting with his staffer was productive as well as they were in support of the NHF initiatives.

Justin Lindhorst and Dave Burgeson attended from the state of Florida. Team Florida included nine advocates determined to help lawmakers understand the unique needs of the bleeding disorders community. While all five offices visited listened attentively to the concerns, the greatest victory came when meeting with Representative Bill Posey (R-FL-08). Rep. Posey was so inspired by the story shared by his constituents, he agreed on the spot to support H.R. 830 as a cosponsor. Congratulations to advocates Heather and Samantha for so eloquently sharing their story and securing support for the HELP Copays Act.

Terry Rice and two other constituents from Maine added their numbers to a larger New England contingency and made numerous congressional visits. Their first home state visit was with Senator Susan Collins (R-ME). Senator Collins listened to the concerns regarding access to affordable lifesaving prescriptions and the effect copay accumulators are having on patients and families living with a chronic illness that must be treated with expensive name brand medications that have no generic alternatives. She was supportive in finding a solution to deal with the accumulator adjustors, which have been crippling the financial and physical health of affected individuals and asked to be kept informed with the progress of H.R. 830 should a Senate companion bill be introduced. As the Ranking Member on the Senate Appropriations Committee, Senator Collins expressed support to continue HRSA and CDC funding of HTCs.

The team also met with Senator Angus King’s (I-ME) office. Senator King’s legislative assistant shared he has type-1 diabetes and was very aware of the detrimental effects of accumulator adjustors. He felt the Senator would support legislation to address the issue and was confident he would continue to support HTC level funding.

On the House side, the team left information with Representative Jared Golden (D-ME-02) and were able to meet with the legislative health aide to Representative Chellie Pingree (D-ME-01) who cosponsored accumulator adjustor legislation in previous years and would again cosponsor H.R. 830. The aide assured Representative Pingree would support continued HTC funding.

The meetings with the House and Senate offices set in motion the narrative of the burden our bleeding disorders community bears: financially, mentally, and necessarily, physically. To all the advocates from the nearly 50 states who joined the advocacy efforts, we say thank you! And to NHF, we also say thank you for organizing this energy on the Hill and aiding the community voices to be heard.

As nuanced as everyone’s experience is of living with hemophilia, von Willebrand, or another factor deficiency – people with a bleeding disorder endure the costs of medications and the need for the protection H.R. 830 would grant; and even if not seen at an HTC, everyone benefits from the funding and support granted by our national institutions: NIH, CDC, and HRSA.

Real change has come from the efforts of NHF Washington Days Advocacy and hopefully, community members who shared their stories this year will impact further positive changes for the bleeding disorders community.


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Camp Warren Jyrch Celebrates 50 Years!

By John Thorson – Longtime Camp Volunteer


Bleeding Disorders Alliance Illinois Camp Warren Jyrch (CWJ) is celebrating a golden anniversary! Fifty years of summer camp began in 1973 when at the time, the Illinois chapter went by the name of Hemophilia Foundation of Illinois. The camp was named to honor Warren C. Jyrch (1921-1971) of Chicago, the first person with hemophilia to undergo and survive open-heart surgery to replace a valve. The surgery was extremely risky with 2400 pints of blood used during the operation.


Through the years, there have been a lot of changes, but many things have remained constant. One area that has seen changes in the past 50 years is the variety of treatment options. Back then, patients spent a significant time in hospitals recovering from bleeding episodes and orthopedic issues. They missed a lot of school and opportunities to bond with other kids. For some young patients, their primary friendships were with hospital staff.

Today’s medical advancements and treatment options allow kids with a bleeding disorder to rarely miss school. Most often, they can participate in all sorts of physical activities like rock climbing, cycling, running, and sports such as baseball, basketball and volleyball, to name a few.

Fifty years ago, communication with affected families was through a tethered phone line or a stamped letter. It wasn’t always easy to make announcements about camp or request information from families. Even getting to camp involved maps and directions rather than an address easily plugged into a GPS. Today our ability to communicate is instant and helps to offer a more positive outlook on managing a bleeding disorder.

In those times, only boys were thought to have hemophilia. Girls were not invited to camp. Siblings weren’t invited either. Today we have a better understanding of how girls are affected by bleeding disorders, especially as more than carriers, and are now included. We also better understand how a bleeding disorder diagnosis affects the whole family, so siblings are also invited to share the camp experience.

Despite the challenges of those days, it was deemed important enough to gather this group of young patients for a week every summer with the purpose of socializing, bonding, and feeling less isolated with their medical conditions. And so CWJ was started. Over the years, we have learned to overcome obstacles and have adapted to many changes. We continue to look toward the future and move forward.

Camp was founded to give boys with hemophilia an opportunity to be with others just like them—to talk, laugh, try new things, support each other, bond, and just be! At its inception, the mission was to encompass a safe and fun environment, encourage peer relationships, and increase self-confidence and independence.

Although many changes have been implemented along the way, the mission of camp remains the same—to encompass a safe and fun environment, encourage peer relationships, and increase self-confidence and independence. Plenty of education has been added. Kids learn more about managing their disorder and camp is where many first learn to self-infuse.

 The first time I volunteered at camp was in 2009. I wanted to bring energy and inspiration, and be a mentor. I also wanted to gain an understanding of what kids with a bleeding disorder deal with and why camp is magical to them. By offering a safe environment and gentle suggestions, camp helps kids think differently, allowing them to go outside their comfort zones to try new activities and learn and share with one another without judgment. 

I want to leave a legacy of having done the best I could to help kids develop and reach whatever goals they set for themselves. The good stuff is when a camp activity applies to life at home, and a camper declares, “I never thought I could, but I can, and I did!” Watching a child grow to adulthood and graduate from being a camper to a counselor is especially rewarding.

On their 50th anniversary, we thank the CWJ pioneers who paved the way with such bravery for future generations of camp goers! We celebrate every attendee, family, caregiver, medical staff, and volunteer who has been associated with the success of Camp Warren Jyrch!

With gratitude and appreciation, I am glad to have been a part of it!


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Advocating for the Women in My Life

By Anonymous


As with many young couples, my wife and I were thrilled and terrified when we first learned we were going to become parents. Although we had been married for three wonderful years, we were not sure we were ready for the responsibility that comes with bringing a new life into this world. But as with most parents, even after 16 hours of induced labor, we both could not imagine our lives without our son.

As all first-time parents believe, our son was perfect, but over the next few days, we noticed his coloring was somewhat pale. After multiple calls to the pediatrician and a visit to the hospital, our son was diagnosed with jaundice and spent several days in the hospital. Worried, but still in awe of this new life, we brought him home to begin our new life as a family.

At four months, we noticed a small bruise on his knee, but the pediatrician told us it was nothing to worry about and so we didn’t. After a few days, the bruise was not dissipating, and we noticed it looked swollen so we took him to the local children’s hospital. What followed was a terrifying sequence of tests, mistakes and follow-up visits until we were finally told our son had severe hemophilia A. Neither of us knew anything about hemophilia and we spent his early years learning and searching for answers.

When our second son was born, we knew exactly what we needed to do. He was tested at birth, and he too was diagnosed with severe hemophilia A. This time we felt slightly more confident about how to handle his diagnosis. Having two sons with hemophilia allowed us to see firsthand the similarities and differences this condition presents in every patient.

During this period my wife and I began to discuss her bleeding issues and how debilitating her menstrual cycle had been throughout her life. We launched a dialogue about her concerns with our son’s hematologist and were told her difficulties were not related to a bleeding disorder. Over the next few years, we settled into parenthood and life with a bleeding disorder and all the ups and downs that come with raising a family. As a couple, we had decided not to have more children, primarily due to the probability of having another child with a bleeding disorder.

As our children grew so did the problems with my wife’s menstrual cycle. After multiple attempts to have her tested at the HTC to no avail, my wife discussed her issues with her gynecologist. After learning about her family history of bleeding disorders, her gynecologist submitted an order for a blood test to check her factor levels. The HTC was forced to review the results of the blood tests and it was determined she had 25% factor VIII which classified her as having mild hemophilia. The HTC told her she was considered, in their opinion, a symptomatic carrier. Although this was not the ideal diagnosis, we were content her issues were finally being acknowledged even though no medication was recommended or prescribed.

Our plan to not have more children did not work out as four years after our second son was born, we were given a delightful surprise in the form of a beautiful daughter. Naturally, we were concerned about our daughter’s potential for having bleeding issues like her brothers and mother. When we brought this up to our hematologist, we were told in no uncertain terms that girls are only “carriers” and there was no need to be concerned. We asked if she could be tested regardless to learn her factor levels but we were told the test was not medically necessary and as such, not covered by our insurance. We accepted the information, albeit with some apprehension, and continued our familial journey.

After the birth of our daughter, my wife continued to have bleeding difficulties that only increased in severity. Ultimately, she was diagnosed with uterine polyps due to years of excessive bleeding that was never treated appropriately. Her gynecologist stated the only way to effectively treat her condition was with a complete hysterectomy.

It was a difficult time for my wife, not only because of the surgery but also due to the lifetime of hormone therapy that would become necessary. In addition to the frustration of this new circumstance came the knowledge that if she had been treated as a hemophiliac, like our sons, some of this would likely have been avoided. 

My wife and I immediately turned our attention firmly to the health of our daughter. We both agreed we would do anything necessary to avoid our daughter having to live through the same bleeding issues and consequences that her mother endured. My wife joined a women’s bleeding disorders support group to learn more about bleeding issues in general and to connect with other women in the community. We attended educational programs and began to prepare ourselves for the struggle we knew was coming. 

When our daughter became a woman, we knew exactly what to do. The month after her first menstrual cycle she was seen by her gynecologist, and we explained how debilitating the cycle had been along with our family history of bleeding disorders. The gynecologist immediately ordered blood tests to determine her factor levels. An HTC appointment was scheduled to review the results of the tests. At the appointment, we were told that her factor levels classified her as a symptomatic carrier. When we asked about the severity of her menstrual cycle, we were told it was relatively normal for some women to have excessive bleeding. After discussing my wife’s history with the doctor and her eventual surgery, the hematologist ordered Stimate® and Amicar® to be used as necessary.

The HTC told us we would receive a diagnosis card in the mail to verify her condition. When the card was received, it stated our daughter was diagnosed with von Willebrand disease. I called the HTC to ask about her hemophilia A status and was told the diagnosis on her card was correct. I questioned which blood test showed a deviation in her von Willebrand factor and none could be found.

I politely requested a corrected diagnosis card be sent and the clinic agreed. The following week we received a new card listing the diagnosis as mild hemophilia A and von Willebrand disease. Our daughter has done well with her treatment over the years.

Several months ago, our daughter was recommended for a minor surgical procedure to remove a cyst. Naturally, the surgeon requested a medical clearance to be completed by her hematologist before surgery. During the HTC visit, her first in a few years, the hematologist informed us that the surgery should not be an issue as she was a von Willebrand’s patient and no treatment should be necessary. Even though our daughter is a teenager she asked me to be with her during the exam and I felt the need to correct the hematologist about her diagnosis. I asked if she could show me the test results that supported the diagnosis, and she answered that no tests were available in her chart.

The hematologist turned to my daughter and made the following statement, “There is no reason to worry. Women do not have bleeding issues.” At this point, my daughter looked at me somewhat confused, as if to ask, “Are you sure I have a bleeding disorder?” I must admit I felt a wave of frustration towards this “specialist” and concern, not only for my daughter, but for all the other young women who are potentially meeting with hematologists around the country and receive this same statement – this brush-off and lack of treatment, making them feel as if everything being experienced is either made up or unimportant, and neither is true.

I spent the next few minutes discussing my experience with women living with bleeding issues and the number of women that I know personally who require prophylactic intervention due to their condition. The doctor quickly backtracked and stated she meant that women who are bleeders are rare, to which I stated, “Hemophilia is rare.” The doctor decided to confirm my daughter’s diagnosis by ordering a panel of blood tests to check her levels.

A few weeks later, my daughter and I were at the HTC to review the results of her blood tests. This time we were seen by the clinic’s medical director, who reviewed the tests and explained the results did show that our daughter was a “carrier” of hemophilia A and due to her factor VIII level of 36%, she may need some treatment before surgery. I mentioned that if her diagnosis was simply as a carrier, our insurance might give us some difficulty reimbursing for factor. The doctor agreed and stated he would make a note in her chart that a 36% factor level constituted a mild hemophilia A diagnosis. To finally hear those words come out of an HTC hematologist about my daughter was an affirmation of what we believed all along.

I felt elated that we were finally able to confirm what my wife and I had known since the first set of blood tests were performed several years prior. At the same time, my heart sank thinking about all those young girls and women who have battled bleeding issues their entire adult lives and do not have access to someone who can and will advocate for and with them. To classify a woman as a “carrier” is to put her in a box and say she is fine. Technically anyone who has hemophilia, male or female, is a carrier. Think about it - men with hemophilia carry that chromosome to every daughter he fathers. Ergo, men, too, are carriers. We need to continue to work and advocate until everyone, regardless of their gender, receives the same level and quality of care possible.


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Our First Year of Living with Hemophilia: a Reflection

By Jeremy Sobotka with Ragina Auch


Ragina and I are the parents of two adorable children – Jade, age 14 and Tristan, 9. We were introduced to the world of bleeding disorders when our son was diagnosed with severe hemophilia B. We’ve learned a lot in the past few years and would like to share the experiences of our first year.


After Tristan was born, his heel was pricked for routine newborn lab work. Throughout the day, the tiny puncture bled through the bandage and booties and onto the blanket. His nurse did a complete bandage, bed and clothing change. The next day, another nurse came in and changed the bandage, put clean clothes on, and brought in fresh blankets. On the third day another nurse arrived to change everything again, and this time I asked, “Why is he still bleeding?” I mentioned that the other nurses had changed everything each day prior because of the bleeding. Apparently, the nurses had not communicated that with each other and the doctor was unaware. When the doctor was notified, a blood draw was ordered to test his platelet count and check for other bleeding disorders. Later that afternoon he came in and gave us the shocking news that Tristan had hemophilia.

Our initial reaction to learning our son has severe hemophilia B was one of fear, grief, confusion and hopelessness. Though Ragina had heard of hemophilia, she didn’t know much about it. Never having heard of it myself, I didn’t even know how spell it! I hoped Tristan would just be given some kind of medicine, and everything would be fine. When I understood it was a lifelong medical condition, I instantly felt sick to my stomach, angry, scared and helpless.

It wasn’t until the 3rd or 4th visit to the hemophilia treatment center when the doctor suggested inserting a port so Tristan could be placed on a weekly prophylactic schedule that I began to realize the lifelong impact. There really isn’t anything that can or would prepare a parent for that kind of news. Everything sounded even worse when our pediatrician said he had never had a patient with hemophilia in his 30+ years of being a doctor.

As Tristan started learning how to get around, bruises began appearing all over. As the bruising increased with his activity level, we became more interested in having a port placed so he could start prophy treatments. However, we had to wait until after Tristan’s first birthday to proceed. He was already walking, and we knew things could get worse. 

At first Ragina and I had split opinions on the decision to have a port inserted. After all, who wants to have their child go through any surgery, especially at a year old? 

After weeks of debating, we decided it would be best for him to have a port. After going through all the difficult blood draws and injections, we have been happy with our decision. For us, it’s been a night and day difference - now that we can give him his treatments and have labs drawn without a single tear! Learning to infuse him via the port was nerve racking at first, but it became our weekly evening family ritual that we did together. Jade’s job was to keep Tristan entertained as I held him while Ragina did the infusion.

He didn’t experience many bleeds before the port was placed, so we have not learned how to access a vein. At nine-years-old, Tristan’s port is still fully functioning, but we are now exploring how best to learn to infuse our son through venous access.

Since those early days, we have accepted that Tristan will have hemophilia forever, or at least until a cure is found. We have realized the best thing we can do is learn as much as possible about his bleeding disorder so we can be better prepared to teach him as he grows up. We’ve been doing our best to treat Tristan as normally as possible. At the same time, overprotectiveness kicks in and sometimes I just want to put him in a bubble. On occasion, we have to get on our daughter because she tends to play rough with him, but he is usually the one instigating the horseplay! As he’s gotten older, he’s proven to be a typical boy who loves to climb and get into things… go figure!

With my son’s first year of life, I have learned that when it comes to bad news about my family, I tend to blow it way out of proportion. I am supposed to be the rock for them to lean on and I admit I am the least qualified for the job. I envy Ragina for being able to keep her cool and be strong enough to handle everything better than I do.

Presently, even though we are not together as a couple, we continue to work together for the benefit of Tristan’s health. We have worked well together in both routine and emergent care. Jade, even years later, still enjoys roughhousing with her younger brother! 

Tristan is doing very well these days and enjoys video games, playing with his friends and family, driving an ATV, and has just signed up for 4-H. He hasn’t had many emergencies, a few stitches, but the biggest issue he continues to experience are bleeds in his ankles. We are in the process of having his dosage adjusted and getting orthopedic inserts for his shoes to hopefully help with that. You would never know by looking at him that he has hemophilia, he is just a normal 9-year-old boy living life to the fullest. 

Hemophilia has been an experience for all of us. It has taught us a whole new level of patience. Tristan didn’t understand in that first year that anything was wrong with him. Even now, his hemophilia has been so well controlled that in his eyes, the problem he has is with the port and treatment rather than bleeding episodes. I don’t want him to know any different! Kids with hemophilia are the same as any child and shouldn’t be treated differently – they still play and fight with siblings. Just remember to be a bit more cautious and alert and know they will have a few extra bruises now and again no matter how careful they are. Take each day one at a time and have faith everything will work out fine!


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In Search of Support

By Fel Echande


My family is a mix of Costa Rican and Mexican descent, and we have lived in the USA for 24 years now. I am a commercial driver, and my wife, Laura, is a photographer. We have two sons, Fiach, 22 years-old, and Yanni, who is 17.


Our first-born son was diagnosed with severe hemophilia B at 10–months old. After consistently showing up to the pediatrician’s office with unexplained bruising, our physician suspected abuse. However, after running a battery of blood tests, it became evident that Fiach has hemophilia.

With no family history of a bleeding disorder, we knew very little about hemophilia. We had a lot to learn. We knew the diagnosis was going to be a struggle, but thanks in part to amazing support from the bleeding disorder community, our family is thriving.

Twenty-plus years ago, the internet was in its infancy. In those early days, the lack of information was challenging us. There was very little information available in Spanish.

My wife came across a book authored by Laurie Kelley, which had been translated to Spanish (no longer available in Spanish). The book proved to be a huge help for us as we struggled to find more information.

Outside of the clinical support provided by our medical team, we began to realize the importance of connecting with others in the bleeding disorders community. Becoming involved with local and national chapters was instrumental in broadening our education, comfort, and ability to deal with hemophilia.

Laura and I began meeting so many wonderful people in the community. Each friendship brought a fresh perspective and helped us see that our son could live a largely normal life. We learned so much from the individuals and families having already walked in our shoes.

Making friends with other children with hemophilia helped our son understand that he is not alone in the world. The friendships taught him to embrace life with a bleeding disorder. When things were stressful for us as parents or for Fiach as an affected child, we knew we could lean into community-based support provided by our local chapter and organizations like The Coalition for Hemophilia B.

Through our involvement we learned to be strong advocates for ourselves, for our son, and for others in the bleeding disorders community.  As the years went by, we became more knowledgeable and confident and were compelled to get involved and give back to the community that had helped us so much.

We are now very involved in volunteering. I am currently on the board of directors for the Hemophilia Association of San Diego County. My wife and I have been part of National Hemophilia Foundation’s Guias Culturales (Cultural Guides helping NHF with workshops for the Hispanic families). My wife was involved with the Hemophilia Chapter of Northern California’s The Female Factor Retreat. We are both very involved nationally with The Coalition for Hemophilia B and we also lead community support groups to help our local families.

We encourage all bleeding disorder families to get involved, get educated, and take advantage of the support provided by the organizations serving this community locally and nationally. Attend events, connect with families, and learn through our shared experiences. For those who are dealing with a new diagnosis know that it does get better. Our community is a family—don’t ever be hesitant to reach out.


Spanish Language Resources


The Coalition For Hemophilia B
Newsletters in English and Spanish

www.hemob.org/newsletter

www.hemob.org


National Hemophilia Foundation
Guias Culturales (Cultural Guides)

https://www.hemophilia.org/educational-programs/outreach/guias-culturales

HemAware en español, https://hemaware.org/es


Hemophilia Federation of America
Sangre Latina

https://www.hemophiliafed.org/join-sangre-latina/


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Time to Rethink Women and Bleeding Disorders: Stop the Unnecessary Suffering!

By Linda “Lew” E. Wyman-Collins, BSN, RNC-NIC


As a woman with hemophilia A, a platelet disorder and Ehler’s Danlos Syndrome (EDS), the bleeds I experience are more in line with moderate to severe hemophilia. At age 65, I suffer with various medical complications and side effects from receiving a later-in-life diagnosis. I did not obtain a diagnosis or proper/adequate treatment for most of my life. The pursuit of equal or compatible treatment that my blood brothers receive has been a struggle.


Throughout my life, dental work and cleanings caused extensive bleeding. Impacted wisdom teeth caused me needless mouth pain for many years, but because of how easily my mouth bled, no one wanted to extract them. Finally at 52, I found an oral surgeon who agreed to remove them with treatment prior to procedure. I experienced senseless tooth and mouth pain for so many years. Now I treat with DDAVP nasal spray prior to all dental appointments, and the bleeding is minimal.

When I was 11 years old, I began having gastrointestinal bleeding. Physicians believed I had colitis; the treatment was dietary changes and medications. The mucosal lining of my lower intestine is permanently damaged from years of uncontrolled bleeding. Now with a proper diagnosis, I am able to effectively treat with clotting factor, desmopressin (DDAVP®) and tranexamic acid (Lysteda®).

All my life, I have bruised very easily and when my menstrual cycles started, I bled heavily with large clots for more than seven days every month. When I voiced my concern to my doctors, I was told my cycle was “normal” because my mother and grandmother also had heavy cycles and that being a fair-skinned redhead added to the bruising. In retrospect, my mother and grandmother both had undiagnosed bleeding disorders. Due to the prolonged bleeding each month, I had chronic anemia, which greatly affected my quality of life.

In 7th grade I injured my knee during gym class. When I look back at that injury, it was clearly a muscle and joint bleed. As I grew older, my left knee deemed itself my target joint. It is chronically swollen with decreased range of motion; x-rays reveal the knee joint is now bone-on-bone. Steroids and gel injections only offer temporary relief, and I am now considering a knee replacement. Had my joint bleeds been treated properly when I was younger, the extensive joint damage could have been avoided or at least lessened. I now wear rib, back, knee and thumb braces due to impaired joints.

Current studies are revealing a correlation between Factor VIII deficiency and bone health, and I have been diagnosed with osteopenia. Women with a bleeding disorder are developing osteopenia and osteoporosis at an earlier age.

In 1983, when my oldest son was diagnosed with severe hemophilia A at 17 months, scientists had not yet discovered the gene where the mutation occurred. When DNA testing became available, I was tested, and the results showed I had the same gene mutation as all 3 of my children, yet despite my bleeding history, I was labeled as just a “symptomatic” carrier.

At 35, I had an inguinal hernia repair scheduled but at that time, wasn’t being seen by a hematologist. After reading in my medical record that I was a carrier, the anesthesiologist refused to clear me for surgery until I was seen by a hematologist. I went to a hemophilia treatment center and was tested and was diagnosed with a platelet disorder.

Shortly after, I was identified as having EDS and was then prescribed DDAVP via IV for any surgery or invasive procedure. Tranexamic acid and aminocaproic acid (Amicar®) helped with menstrual cycles and mucosal bleeds. In my late 40’s, I was finally properly diagnosed with a bleeding disorder and received appropriate treatment for chronic anemia; yet I was not given access to clotting factor for another 17 years.

Unfortunately, the majority of the medical community is often still under the notion that only males can have a bleeding disorder. The assumption is women are only carriers and do not need treatment. However, rather than basing care on gender, treatment should be based on documented factor levels and bleeding tendencies.

Our national organizations, non-profits, and pharmaceutical companies have done a great job at educating the community on bleeding disorders in men and women. Yet, there still remains a missing piece on prescribing proper treatment for women. Education needs to be expanded at the medical school level to instruct doctors-in-training to recognize that women can and do bleed. In the meantime, women need to advocate for themselves with a much louder voice and not allow themselves to be dismissed. In the 25 years I have been active in the bleeding disorders community on a national level, I have not seen much change in the timely diagnosis and adequate treatment for women. This needs to change.


ABOUT THE AUTHOR

Linda “Lew” E. Wyman-Collins, BSN, RNC-NIC is a mother, wife, aunt, sister, and daughter of someone with a bleeding disorder and has a bleeding disorder of her own. As a nurse, she has much experience in neonatal intensive care and was recognized as Dallas/Fort Worth Great 100 Nurses. Lew served HFA formerly on the Board of Directors, Blood Sisterhood Chair, Symposium Chair, Medical/Professional Advisory Board member, and is a founding member of HFA’s women’s group Focus on the Feminine. She has served on Texas State Bleeding and Clotting Disorders Advisory Council and is a member of Equity in Bleeding Disorders Care for Women and Others. Additionally, Lew has presented frequently at national and international conferences and has authored numerous articles on hemophilia and women with bleeding disorders in industry magazines and journals.


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Living with Hemophilia: Hope for Help

By Ashley Gregory


Anthony and Nicholas were born in 1998, and although I had no family history of bleeding disorders, I now had twins with severe hemophilia A. I became informed about their condition and as they grew, stayed in close contact with our hemophilia treatment center. Also in 1998, NHF launched Project Red Flag, which advocated for women with bleeding disorders. I remember being curious because I had experienced puzzling symptoms throughout my time, but life would take a darker turn, and it would be several years before I could revisit this topic.


One day Anthony didn’t seem right; he was lethargic and not eating. I took him to our pediatrician who suspected the flu. I remember looking directly at her and saying, “Shouldn’t we infuse him since his head is hot, but he has no fever?” She said, “No, just take him home.” Instead, we took him to the emergency room where we learned he had a brain bleed. Despite heroic surgical efforts and finally infusing factor, my son died the next morning – he was only 11 months old. Thus began a slow tumble into despair that our family would not emerge from until well into the next decade.

During subsequent years, researchers were learning that women with the hemophilia gene exhibit unexplained bleeding symptoms and need treatment. Some doctors began successfully working with women to determine how to manage symptoms using factor replacement; they were learning that despite “normal” factor levels, women who experienced unexplained bleeding responded well to factor treatment with no adverse reactions. It was unexplained bleeding that pulled me back into a search for a diagnosis.

While volunteering at my local foundation, I heard women discuss similar untreated symptoms around inexplicable bleeding. It didn’t take long to realize there was a common problem. Women in our community, like me, were experiencing puzzling bleeding that was not addressed despite reporting these symptoms to their doctors. The concerns were usually explained away with comments like, sometimes these things happen, sounds like all the women in your family are like this, or this is just your normal. Were we being ignored, or did the doctors simply not believe us?

This led to a personal investigative journey to seek a diagnosis and treatment while, at the same time, pursuing a career in advocacy and education in bleeding disorders. I began attending local, regional and national programs that provided comprehensive education about my bleeding symptoms and brought me in contact with physicians who were successfully treating women’s bleeding issues using all the medications available to men with bleeding disorders.

I learned about lyonization, which is when one of the two X chromosomes in every cell of a female is inactivated. Lyonization can cause an effective X chromosome to stop working, allowing the other ineffective X chromosome to take over, producing lower factor levels. This led to an even greater understanding of my particular bleeding disorder as a woman with two X chromosomes. Thanks to Dr. Barbara Konkle and the My Life, Our Future genetic analysis project, I learned that some mutations present a high factor level but bleed like a severe! I finally learned that connective tissue disorders can also be present in persons with bleeding disorders, which can then exacerbate bleeding.

Empowered with this knowledge, I confidently entered the HTC near me and presented the information I had gathered, along with my symptoms and history. I trusted I would be heard and cared for. I could not have been more wrong. I even brought my mother along who had been by my side through all my pain and could attest to my history. The treatment center told me my factor levels were too high for my swollen ankles and knees to be caused by hemophilia, and my petechiae were birthmarks.

My unexplained bleeding history was useless in gaining a diagnosis here. I was also seen by the genetics specialist who told me I lacked enough markers to have a connective tissue disorder. I was left with the option to do nothing or to have a synovectomy on my right ankle to see what fluid it contained. Based on my past, I instinctively knew without infusing factor prior to the procedure, the healing process would be long and painful. I declined the surgery in pursuit of a better option. 

It was time to try a new approach. I crossed state lines and met with an expert clinician I had met at a national symposium. After a thorough medical evaluation, complete history review of symptoms, physical evaluation and lab workup, I was diagnosed with hemophilia A (symptomatic carrier) and hypermobility syndrome – a connective tissue disorder meaning my joints stretch further than normal. Aminocaproic acid (Amicar®) was prescribed for mucosal bleeding and clotting factor for muscle and joint bleeds. An emergency medical card was prepared with my treater’s name, contact number and diagnosis. A medical alert bracelet was ordered for me, and I was instructed to contact the treatment center and treat on-demand as needed.

Imagine my delight to find when I treated a bleed as my hematologist instructed, my whole body felt better; things that had hurt my entire life stopped hurting; my petechiae cleared, and the swelling in my knees and ankles subsided. Then, as the factor left my body, the pain and baffling bruising would return.

I was able to access treatment from the out-of-state HTC for a short time, and I was emboldened to treat my hemophilia the same way I was as a mother in treating Nicholas’ hemophilia. Since I had been infusing him for years, infusing myself was easy, and I kept a log of bleeds and treatments. I was amazed at the overall improvement in my energy and stamina when using factor!

Moving forward to 2022 – Through my out-of-state HTC, I was able to access free trials of factor products, but those have ended. I am no longer able to have treatment for my bleeds. The system that pays for factor for persons with bleeding disorders requires an in-state doctor to write the prescription. So far, I have not found a doctor in my state who is knowledgeable about the particular genetic mutation that causes me to have a high factor level yet bleed severely. I am now a woman without a treatment center and without treatment.

My chronic pain and suffering affects not only me, but my family as well. Because of my health, we are not living our best life. In spite of this, I am grateful for my experiences, to my sons born with hemophilia, and to Anthony who didn’t survive due to the lack of knowledge that prevails to this very day. This lack prevents his mother from treatment and medication.

I am grateful to Nicholas, who bears witness to the stark contrast of gender care in hemophilia. I have built a career advocating for those like me who are unable to access the care we know is needed. I am appreciative for all of these experiences, but I would also like to be grateful for access to treatment for all women with hemophilia. It is my hope this will be a reality soon.


TIMELINE HIGHLIGHTING A FEW SYMPTOMS THROUGH THE YEARS:

  • Age 4: my first memory of severe pain in my knees. I had no words to describe the pain and it went unattended.

  • Age 9: moved to a home in a hilly area. I had pain that brought tears and immobility. Diagnosed with pre-patellar chondromalacia and was instructed to avoid hills and stairs, and to rest, ice and elevate. The constant pain kept me sedentary.

  • Age 10: my menstrual cycle began with extreme pain, heavy clots, bruises under my eyes and sheer exhaustion. Soaked through sanitary pads and ruined sheets. At school, it seemed I was in the bathroom more than in class. Treatment for this would never come. I spent my menstruating years suffering the effects of anemia.

  • Age 15: cut my ankle on a jagged piece of wood. The wound kept oozing and reopening, taking a year to fully heal.

  • Age 16: worked long shifts standing on a hard restaurant floor, in constant pain, fatigued, with swollen knees and ankles. When sitting, I would draw my legs up under my body to prevent my ankles from dangling as the pain was unbearable. Tired and hurting all the time. By the time I became sexually active, I bled with intercourse regardless of my cycle.

  • Age 21: diagnosed with gout in my toe. I now recognize this was a bleed.

  • Age 25+: with each of my first 3 pregnancies, I experienced anemia, 2nd trimester spotting, petechial hemorrhaging around my face during childbirth and prolonged postpartum bleeding. 2nd pregnancy brought throbbing pain behind my left eye leading to a spinal tap that would not clot causing a week-long leak of cerebrospinal fluid. 3rd pregnancy resulted in prolonged healing of c-section incision.

  • Age 27: wisdom teeth extraction bled for weeks.

  • Age 28: at the ER with excruciating knee pain. Was told there was nothing to be done.

  • Age 32: sons Anthony and Nicholas were born via C-section. A bleed at the incision caused excruciating pain; bleeding and severe bruising in my groin and down my legs.

  • Age 35: diagnosed with fibromyalgia.

  • Age 45: diagnosed with tendinosis (Related to connective tissue disorder).

  • Age 53: finally diagnosed as a symptomatic carrier of hemophilia A and connective tissue disorder reaffirmed. Was prescribed factor, Amicar® and physical therapy.

  • Age 56: free factor trials end; I no longer have access to treatment.


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New Hemophilia Classifications For Women

By David Clark, Ph.D.


We now recognize women can also have hemophilia, and it is imperative to define diagnostic criteria that apply to them. This is needed for insurance coverage of their treatment as well as their own recognition and self-respect. Imagine if you had to limp around on your damaged joints from doctor to doctor to find one to take you seriously. Too many women in our community have had just that experience. Now, we can give names to their conditions.


An international group of twelve hemophilia treaters and patient advocates has taken on this project under the Scientific and Standardization Committee (SSC) of the International Society on Thrombosis and Haemostasis (ISTH). The project was mainly supported by the NHF, HFA, and the Coalition for Hemophilia B from the U.S., as well as other hemophilia organizations around the world. There was no commercial support. The results were published in an article in the Journal of Thrombosis and Haemostasis on July 31, 2021. [See the complete citation at the end of this article.]

The results are shown in the table below. The same classifications are used for both hemophilia A and B. For factor levels up to 40%, women receive exactly the same diagnoses as their male counterparts. They are classified as severe/moderate/mild based on their factor levels. Above 40%, the tables turn. Men with factor levels above 40% are not considered to have hemophilia in many countries. However, women who are carriers with factor levels above 40% can still have a bleeding diagnosis.

The first thing to recognize is that the term “carrier” is now being returned to its proper definition. Carrier is a genetic description – it does not define a bleeding disorder. A woman is a carrier because she carries a mutated factor VIII or IX gene on her X chromosome that she can pass on to her offspring. She may or may not have a bleeding disorder. Carriers can have normal levels of factor VIII or IX.

Next, we need to discuss the international standard of 40% upper limit for hemophilia. In the U.S., we commonly use 50% as the upper limit for hemophilia and the lower limit for the range of normal factor levels. We recognize men with clotting levels up to 50% may still have mild hemophilia and may need treatment. In the rest of the world, men with levels of 40 – 50% are not considered to have hemophilia.

This gets more complicated because we know women can bleed even at levels up to 60%. We don’t know why they still bleed, but the study’s authors have recognized this and have given women two more categories. If a carrier has a level above 40% and does not have bleeding symptoms, she is classified as an “asymptomatic carrier.” However, if a carrier has a factor VIII or IX level over 40% (with no upper limit) but still has bleeding symptoms, she is classified as a “symptomatic carrier.”

This fuzziness in the over 40% levels could lead to situations where it is now the men who could have trouble getting treated. Going by the international classification, a man with a 50% factor VIII or IX level would not be considered to have mild hemophilia, even if he has bleeding symptoms. Yet, if he were a woman with a 50% level and bleeding symptoms, she would be a symptomatic carrier who might have a better chance of being treated. 

In addition, all of the categories are just approximations. It is the best we can do with our current state of knowledge. We know that about 15% of people (men and women) do not bleed according to their category of mild, moderate or severe, as determined by their factor level. For instance, some people classified as severe bleed like moderates. Some people classified as mild bleed much more heavily.

Another term seen is obligate carrier. This is also a genetic description, not a bleeding diagnosis. If you are genetically female (have two X chromosomes) and your father has/had hemophilia, you are an obligate carrier. That means you carry (have inherited) your father’s mutated factor VIII or IX gene. That’s just how genetics works. You may or may not bleed. Of course, the genetics can always mess up – that’s how we get hemophilia in the first place. However, it is extremely unlikely that when your father passes along his mutated factor VIII or IX gene, there is another mutation that actually fixes the gene.

One interesting point in the article is the estimate that for every male with hemophilia, there are 1.6 female carriers. Since many of these female carriers might have bleeding problems, there may actually be more women with hemophilia than men. Tell that to your doctor who says women don’t get hemophilia!

This is all based on averages, and no one is average! That’s why you always have to talk to your doctor about your individual case. No one should bleed, no matter their factor levels.


ABOUT THE AUTHOR

David Clark, PhD. is an independent consultant to the biotechnology, plasma, and tissue industries. He has 35+ years of experience in the development and manufacturing of plasma and tissue products, including factor VIII and factor IX concentrates, primarily with the American Red Cross. Dr. Clark holds a Ph.D. in chemical engineering from Cornell University.


REFERENCE

van Galen Karin PM, et al., A New Hemophilia Carrier Nomenclature to Define Hemophilia in Women and Girls: Communication from the SSC of the ISTH, Journal of Thrombosis and Haemostasis, 19(8), 1883-1887, 2021. https://pubmed.ncbi.nlm.nih.gov/34327828/


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His Blood... the Ink Inside My Veins

By Sawsen Jamaleddin


The aroma of ginger and garlic swirls in and out of my nostrils, tap dancing inside a wok of hot oil, overpowering the sterility of bleach that has inhabited our house for the past year. The two women in our small kitchen are dressed in matching blue uniforms. They are stirring and whispering as the flame of the oven rises and relaxes against the hum of the microwave vent. The one with brown curly hair notices me and smiles. The other is so tall that I question the ceiling. But I have stopped questioning their presence. Hunger is stronger than my curiosity. Fear is better than knowing.


The tall one moves the wok back and forth with a grace that reminds me of a swaying palm tree. “How was school?” she asks, sprinkling small conversation between us, her eyes as warm as the heat fogging up the windows. I have no words to respond. At ten years old, my tongue refuses to work with my mind. Years of a lisp and speech therapy and I still can’t form the question that is on my mind. What is wrong with my father? I know she knows what I don’t.

She was there the day I opened my parent’s always-closed bedroom door and ran inside with a set of BIC pens that I bought for my father’s upcoming 43rd birthday. When I neared his bed, I did not recognize the skeletal body in front of me. Brown eyes that resembled mine opened, disoriented, turning into droplets of despair when he blinked at me. His dark skin looked faded in the light of sun, the cascading rays revealing an IV that protruded from his arm. He resembled a prisoner of war, starved, resigned. All I wanted to do was bandage the pain, cover his bones with my skin, drape my eyes from seeing, from imprinting the image of my father in front of me.

“Who is she?” he asked staring at me. Shock stood numbly between us. The set of pens fell from my hands, unwilling to write the tragic chapter unfolding.

It was then that I noticed movement in the corner, the tall woman making her presence known, as she stood up from the opposite side of the room and rushed to pick up the set of BIC pens off the floor. She put the jumbled pens in my palm and ushered me out of the room.

Weeks later, my father lost the war of life.

The kettle sputters and seethes. I turn the stove off and pour the water into a floral cup that has survived my move into wifehood. I open the white canister to get a tea bag when I suddenly feel a rush of liquid run down my legs. The vinyl tile in the small kitchen has become a pool of amniotic fluid. At twenty-two years old, I am going into labor for the first time. It seems that my unborn daughter is as patient as boiling water.

“Ahmad,” I call out to my husband of less than a year, “it’s time!” He sprints out of the room, then stands frozen by the murky water in front of him, a look of excitement and fear crisscross across his face. The ride to the hospital took less than ten minutes, but once we got there, labor seemed endless. After more than twenty-four hours of what-the-hell-was-I-thinking screaming, along with spurts of meconium leaking from my womb, an emergency c-section was the only option to deliver my baby safely.

Once the epidural was given, everything became hazy. All I remember before the blackness is hearing the doctor’s panicked voice in the background, “She’s losing a lot of blood.” When I woke up, it took me a while to orient myself to where I was. My husband was seated in a chair facing the window. My mother was seated beside him. My newborn daughter was in a bassinet beside my bed. I tried to move my arms to pick her up, but my limbs felt like spaghetti. Pain ricocheted throughout my body. I stifled my scream when a nurse came in and handed me pain medication. Then the doctor walked in.

He congratulated us and then explained I had lost a lot of blood during surgery. “I’m wondering if you have von Willebrand disease?” he questions me. Von-what? I thought. It was the first time I had heard that word. I shook my head no.

“You lost a lot of blood. I would like you to have a blood transfusion,” he advised. My mother stood up. “No,” she shook her head adamantly, “No blood transfusion.” Why not? I wondered for a fleeting second until brain fog and pain clouded my curiosity that I said nothing. The doctor sighed, “We’ll try an iron infusion instead.” My mother nodded for the both of us.

Depending on who you ask, childbirth seemed like a small pinch compared to a wisdom tooth extraction. Once my teeth were extracted, strong painkillers were prescribed, and I devoured them like M&Ms until I became aware that the more I took, the more my mouth bled. When the pain finally eased without medication, gauze pads still had traces of blood more than a month after the procedure.

During the follow-up appointment, I asked the dentist if the ongoing mouth bleeding was normal. “Everyone is different,” he answered. Instead of demanding he investigate my concern, I walked out with more gauze. It took another month for the bleeding to stop. I have never had another tooth extraction. However, I did have three more children. Motherhood is a dizzying merry-go-round.

A year after my daughter was born, my nephew also made his entrance, granting me the title of Aunt. It was a year of new beginnings, but it was also a year of numerous hospital visits. I couldn’t understand the unexplained bruises that riddled my nephew’s small body. It reminded me of a past life, one I couldn’t quite put my finger on.

After a light fall from a bunk bed when he was five years old, an egg-shaped bump on my nephew’s kneecap formed, making it hard for him to walk. My sister took him to the hospital to get some answers. After waiting nervously for some news, my mother called to share the diagnosis. “The doctors think he has hemophilia,” she said reluctantly. Although it was the first time consciously hearing that word, it felt oddly familiar. “Your father had hemophilia,” she explained, but didn’t elaborate.

That night I googled the word: Hemophilia. Bleeding disorder. I searched for the cure. Incurable. The next day my younger brother and I drove to the hospital together to visit my nephew. “You know Dad had hemophilia, right?” He asked, not waiting for my answer. Something about the way he braced his hands across the headrest made me sit up straight and pay attention to what he was about to say. Although he was younger than me by two years, he was closer to my mother, and I knew whatever he was going to say was going to be insider information. “You know how Dad died, right?” I said nothing. This question was something I’d been wondering about since the day he took his last breath. “He got HIV from a tainted blood infusion.”

Staring out at the twirling hands of a turbine while my father drove, his hands clutching the steering wheel so tightly his olive-colored knuckles looked as faded as the clouds that traveled with us. I never asked where we were going. I was simply happy to miss a day of school, excited to bask in my father’s presence since he was always on the go, even when it seemed like his limp made it hard for him to go the distance. For as long as I remember, my father always walked that way. It was more pronounced when he was standing for a long time. He never complained and I never questioned it, thinking he was just born that way.

But there are things I wish I had questioned then, things that my young mind wondered about, like the vials of medicine in his closet that were neatly stacked beneath his coats, the times he spent a few days in the hospital and came home without an explanation. Or the nurses who used to go into my parent’s room before I went to school, and when I would return, the smell of Asian food would waft through the house – sometimes I wonder if that is where my love for Chinese food came from.

Was I trying to hold on to the time my father was alive? To the moments when I didn’t need answers because he was still alive, and that was all that mattered? Or was I too afraid to wander into the truth for why there were nurses around the clock, and instead, chose to comfort myself with the food they fed me and my siblings? Sometimes I wish I could pause and rewind the years to get the information that medical records no longer contain. I wish I could ask my father just one question: Can you tell me all about you so I can know more about me?

After more tests, my nephew was diagnosed with severe hemophilia. He needed clotting factor. It was then that I examined my lifetime of symptoms. The excessive bleeding. The unexplained bruises. The joint pain. I requested genetic testing for myself as well as testing for my factor VIII level, along with my children. My children were cleared genetically, and their factor levels came back normal. But I held the mutation gene. My factor level came back at 42. I knew then that I too needed factor. I also knew that I too had hemophilia. Not only was it factored in my blood, but in my joints, the result of years without proper diagnosis and treatment.

However, getting diagnosed as a woman with a predominantly male bleeding disorder is like trying to convince a giraffe it is of average height. Or like trying to convince your blood to clot by just shouting at it. The struggle to be heard and be taken seriously is absurd, but painfully real.

Sitting in various waiting rooms has given me a newfound appreciation for HGTV and the Food Network. It has also given me an abundance of patience that seems necessary when dealing with a bleeding disorder. The last hematologist I visited when I was thirty-six told me it was a “mystery of life” why my joints ached. She gave me the classic carrier status associated with being the daughter of a severe hemophiliac. She discarded the results of my genetic mutation, discarded my low factor VIII level, discarded my low ferritin level, and basically told me my symptoms were imaginary.

If only that were the case, then I’d will my blood to clot, I’d will my restless legs at night to stop shaking, heck, I’d will Starbucks to deliver a few shots of espressos on the spot. And I’d request a lot of ice. Because my chronic anemia demands a cold wake-up call in the morning. The truth is if I were a boy, all these symptoms would ensure a quick diagnosis. Hemophilia. And swift treatment. Factor. But my double X-chromosome warrants a shoulder shrug and the concerned-for-my-mental-health stare from various hematologists.

During the pandemic, I learned about the Hemophilia Federation of America and joined my first virtual session. It was then I realized that my story was like many women with bleeding disorders. We have been made to feel like we don’t matter. We are often overlooked and underheard. When I finally received a referral to get diagnosed, I was ecstatic. But the catch was that the clinic was hundreds of miles away from my house. I knew it was the only option for me as a woman to get diagnosed.

Once I arrived at the clinic, I felt reassured. After asking me a few rounds of questions and performing lab work, I was sent home with hope. Once the results came in, I was relieved. Mild hemophilia. It was the truth I had waited for; it was the written proof validating years of pain.

But the reality is that getting diagnosed is not enough. Treatment must be implemented. Words of reassurance that I am fine from healthcare professionals do not stop the bleeding. They do not change history. The Hemophilia Holocaust took my father. If more care isn’t taken, more lives are at risk by not getting the proper treatment.

At thirty-nine years old, my joints ache. My body hurts. You can often find me resting in bed, reading a book, or complaining how depleted of energy I am. I feel a lot of my exhaustion is due to having to fight twice as hard with medical professionals, to warrant a proper diagnosis for my bleeding disorder and to receive treatment. It should not have taken hundreds of miles and numerous hospital visits to find a doctor who acknowledges women with bleeding disorders.

It is time that a woman is taken seriously. She knows her body. If she is seeking help from a medical professional, it is not because she likes to watch paint dry while watching DIY home remodeling shows, no matter how nice the shade, or watch how to cook pasta while wearing an adult diaper, praying the blood doesn’t leak through her clothes until she can meet with a doctor, only to leave empty-handed searching for the nearest restroom to assess the damage.

It is time the past stops bleeding into the present. It is time a woman is given the red-carpet treatment in the bleeding disorders community because she bleeds just as much as a man, if not more.


ABOUT THE AUTHOR

Sawsen Jamaleddin is American by birth and Palestinian by heritage. Sawsen earned her Bachelor of Arts in educational studies from Western Governors University and is a substitute teacher. She lives with her husband and four children. She enjoys writing and traveling and is excited at finally being able to connect with women who share her history in the world of bleeding diagnosis. Sawsen was reintroduced to her family history of hemophilia when she was 29 years old. She is passionate about advocating for women in the bleeding disorders community.


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How to Avoid Access-to-Care Issues When Initiating New Coverage

By Justin Lindhorst

New Year, New Plan 2 (1).jpg

The beginning of the year, for many, can mean initiating new health insurance coverage. When initiating new coverage, individuals living with a chronic health condition sometimes experience challenges that can delay access to prescribed therapy.

This article outlines how specialty pharmacies like BioMatrix can help patients avoid access-to-care issues, provides tips and best practices patients can implement, and includes links to helpful resources.


Specialty Pharmacy Support

Anyone who has a chronic health condition can identify a time they’ve had to spend a significant amount of time on the phone with their health insurance plan. Unfortunately, patients share it’s not entirely uncommon to be told one thing by one customer service representative, only to be told something entirely different by another.

Specialty pharmacies can help break down barriers to care and cut through red tape by conducting a thorough benefits investigation, facilitating access to financial support programs, and working with your insurance plan and medical team to provide support for prior authorizations and appeals.

Specialty pharmacies such as BioMatrix employ staff who are very well versed in promptly identifying and resolving coverage issues specific to your health condition. The first tool at their disposal is conducting a comprehensive benefits investigation. The benefits investigation provides a detailed outline of coverage specific to your therapy, including whether it is covered under the medical or pharmacy benefit, whether the medication requires prior authorization, your financial responsibility, and what specialty pharmacy service providers are available under the plan.

After the benefits investigation is complete, the specialty pharmacy can refer you to available and appropriate patient assistance programs to reduce financial barriers to care. They can also work together with your medical provider and health plan to obtain timely prior authorization for service and assist when and if an appeal is necessary.

Asking your provider to send a referral to BioMatrix or another reputable specialty pharmacy is a good first step in avoiding coverage issues.


Maintaining Access to Care: Tips and Best Practices

There are also steps you can personally take to avoid access issues. Following the guidelines below can go a long way in resolving potential barriers.


Be Proactive

Don’t wait until you are critically low on medication to place your first order with your new health plan. Placing your order in a timely manner will give your medical provider and specialty pharmacy enough time to resolve any issues before it potentially disrupts your care.


Reach Out to a Social Worker

If you are experiencing or anticipate coverage issues, social workers can be a great source of support. Many medical providers supporting patients with rare or chronic health conditions engage social workers as part of a multidisciplinary care team. Ask your provider if there are social workers available to assist with coverage or other issues.


Keep Detailed Records

When you need to contact your insurance provider regarding any issue or concern, it’s very important to document every call. Keep notes on the following: date and time of the call, the reason for the call, name of the person you spoke with, the result of the call, reference number, and any impact on your health resulting from the issue/call.


Document Medical Necessity

Work with your medical provider to document the medical necessity of your treatment. Having robust documentation on file can speed the resolution of issues related to prior authorization, denials, step therapy, or appeals. Ask your provider to write a letter on official letterhead identifying your diagnosis, the therapy you have been prescribed and why, any previously failed treatments, and the consequences of not having access to your prescribed therapy.

Include medical records, clinical evaluations, or other supplemental documentation supporting your diagnosis/treatment. Keep a copy for your personal records, and request a copy be kept on file with your specialty pharmacy.


Check for Copay Accumulators

If you are using a manufacturer or other third-party copay assistance program, determine if your plan is using a copay accumulator. Verify with your specialty pharmacy whether payments are being received from the copay assistance program you are enrolled in.

Once you’ve verified payments are being made, check your Explanation of Benefits (EOB). If the payments from your assistance program are not being applied to your out-of-pocket costs, your plan may be using an accumulator program.


Understand the Appeal Process

Every plan’s process for an appeal varies. Check with your insurance provider to determine their specific appeal process. Don’t hesitate to involve your medical provider and specialty pharmacy for additional assistance.

Understand the denial of the claim by investigating the explanation of benefits statement (EOB). There is often a code noted on the EOB if there is a denial of coverage or a letter with codes and a key code to decipher what the denial was based upon. Identifying the code will allow you to see if it was a true denial or a basic miscoding by the provider or insurance.

Keep all documentation including referrals, doctor’s notes, medical history, medicines or prescriptions, and notes from all contact with providers or insurance regarding the claim. The burden of proof is in your hands.


Organize Your Paperwork

If you have the aforementioned documents, you might also need to write a letter to the insurance company (written appeal). Keep documentation of your claim number, insurance information, provider/services information readily available. Request a reference number and employee name for every phone call to your insurance plan. 

Be cognizant of the appeal timeline (30/60/90 days in many cases). Be sure to file all paperwork and make calls within the timeline allowed. If your appeal is denied a second time you may be able to file another appeal. Some aspects of the ACA mandate states allow an external review process for denied claims.

Follow up on every call, text, email, and mail document you submit. Be sure it has a record of receipt.


Navigating new coverage can be challenging for patients who require specialty medication. Avoid any potential disruptions in care by leveraging every resource at your disposal. Work with your specialty pharmacy and medical providers early in the month to identify and resolve issues before they become an emergency. 

Follow the guidelines as outlined above any time you reach out to your health plan. Working together at the start of a new plan can make all the difference in maintaining uninterrupted access to the therapy and services keeping you healthy.


Useful Links

Centers for Medicare and Medicaid Services: Official website for the Centers for Medicare and Medicaid Services (CMS): https://www.cms.gov/

E-Health Insurance Glossary: eHealth provides a list of common insurance terms on their website: https://www.ehealthinsurance.com/health-insurance-glossary/terms-c/

Employee Benefits Security Administration: https://www.dol.gov/agencies/ebsa

National Association of Insurance Commissioners (NAIC): NAIC is a standard-setting and regulatory support organization. Their website includes a map that will allow you to determine the insurance commissioner in your state: https://content.naic.org/

Patient Advocate Foundation: The Patient Advocate Foundation (PAF) is dedicated to improving healthcare access. Their website offers education, assistance, and resources related to healthcare coverage: https://www.patientadvocate.org/

United States Department of Labor: Includes information on ERISA and COBRA plans: https://www.dol.gov/general/topic/health-plans


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Reference

National Hemophilia Foundation. (2021). Comprehensive Medical Care. https://www.hemophilia.org/healthcare-professionals/guidelines-on-care/comprehensive-medical-care

Gender Equality in Bleeding Disorders

By Danielle Nance, MD


Bleeding symptoms in women have been documented since ancient times and, in modern literature, recognized since the early 1900s.

Women with a genetic mutation for hemophilia have a 40-60% chance of having bleeding episodes during their lifetime requiring treatment and an 80% chance of having heavy menstrual bleeding. Due to X chromosome inactivation, one normal X chromosome is not always enough to produce a full amount of factor.


Even in the same family, the severity of bleeding symptoms in women varies a lot because of X chromosome inactivation, and we know now that bleeding symptoms don’t correlate with factor levels the same way they do in men. Treating bleeding symptoms in women when their factor levels are 30-50% is not always reimbursed by insurance. This can be confusing to treating physicians who were taught to treat based on “the numbers.” Treatment with intravenous medication is seen as invasive and therefore seen as “too difficult” or too expensive to use unless the bleeding is severe.

In men, even a minor bleed is no longer tolerated. Bleeding symptoms in women are often minimized or even dismissed by medical providers. As we understand more about bleeding symptoms and access to medical treatment becomes more widespread, more and more women are being offered treatment for their bleeding symptoms. 

Why should any bleeding be endured in women? Women have the increased burden of bleeding from their ovaries, uterus and reproductive organs during pregnancy, delivery and postpartum.

This issue is dedicated to women who bleed and celebrates the stories of those who have courageously talked about their personal symptoms and challenges. As women, we can help improve care for all by continuing to report bleeding symptoms and insisting on getting imaging with CT scans, MRIs, and ultrasounds to document pain and find out if the discomfort and swelling are from bleeding.

As a physician who treats women with bleeding disorders, I ask that each woman keep a calendar and write down symptoms of bleeding, especially the ones that disrupt home, work and leisure activities. Bring the calendar with you to your clinic appointment. If treatment is refused, be brave enough to ask why and ask for more studies so you can learn about your body and how to better care for yourself. Not all pain is from a bleed, and not all pain needs to be treated. Pain provides a signal for investigation. The more we know about symptoms, the better we can work through them towards better health.

May joy be with you in your journey.


ABOUT THE AUTHOR

Dr. Danielle Nance is a hematologist at Banner MD Anderson Cancer Center in Gilbert, Arizona. As a physician of more than 17 years, Dr. Nance shares, “I seek to bring accessible, expert care to each of my patients. I believe in advocacy for patients with rare diseases, access to care and insurance, and improving the patient experience.”


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Patient Navigation: Understanding Surprise Billing


This article defines “surprise billing”, offers scenarios where a surprise bill may occur, and also provides brief information on the No Surprise Act.


What is “surprise billing”?

Specific to healthcare, a surprise bill refers to a “balanced bill” where a provider bills you, the patient, for the difference between their charge and the amount paid by your health plan. A surprise bill is usually the result of an out-of-network charge. When a cost is in-network, the provider and the insurance plan have a previously agreed-upon arrangement for what the provider will charge and what the insurance will pay. With an out-of-network cost, no such agreement exists: the provider will charge what they feel is appropriate, and the insurer will pay what they feel the service is worth. When these two figures do not align (usually with the provider asking for more than the insurer is willing to pay), the patient is billed by the provider for the balance difference. It will then become an unexpected or “surprise” bill to you, the patient.


In what scenarios might you receive a surprise bill?

There are numerous situations that might lead to a surprise bill, but a majority of these are related to emergency (ER) services. In the ER, providers often have to act quickly, and they may be using contracted help—such as an X-ray that is read by an outsider, third-party source. In another scenario, you might have a blood draw where the phlebotomist is in-network, but the lab result is farmed out to a service that happens to be out-of-network. Another common scenario may involve a procedure where a specialized provider involved in the procedure (like an anesthesiologist) may be out-of-network, even if the procedure facility and the primary physician/surgeon is in-network.


What can I do if I get a surprise bill?

Recently passed legislation protects patients from surprise billing. The No Surprise Act offers consumers billing protections when getting emergency or non-emergency care from out-of-network providers at in-network facilities. It also provides out-of-network protection from air ambulance services.

The No Surprises Act, however, does not protect you if your provider (ER, hospital clinic, or other facility) is out-of-network.


What can BioMatrix do to help with a surprise bill? 

If you think you are a victim of a surprise bill, we can determine if the bill in question falls under the patient protections of the No Surprise Act. We can also help guide you to a resolution.



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Patient Navigation: Understanding Step Therapy Mandates


This article defines “step therapy,” provides helpful information on the patient impact of step therapy programs, and includes resources to learn more about step therapy.


What is step therapy?

Step therapy is a utilization management technique for drugs that prevents the patient from accessing prescribed treatment and instead mandates a therapy as dictated by the insurance plan. In laymen terms, it means trying “less expensive” drug options before “stepping up” to a more costly drug therapy. Step therapy plans could dictate that a patient begin treatment with a cost-effective drug before progressing to a more costly drug therapy if the initial treatment is proven ineffective. Some providers refer to this as a “fail first” plan.


How does step therapy impact me?

Step therapy is more prevalent in commercial plans and may or may not impact you depending on your particular health plan. If your health plan implements a step therapy mandate, you may have to utilize other medication before receiving approval for a more expensive therapy. You will have to document the ineffectiveness of the preferred, less expensive therapy before being permitted to switch. In some limited cases a doctor’s intervention may allow an override of the step therapy program.

For many chronic and rare conditions, a less-expensive (often “generic”) medication may not exist. In this scenario, a health plan may prioritize the most cost-effective medication as the starting step for medication. The health plan may dictate medication choices based on cost savings and may even deem some of the products as interchangeable. Significant documentation is encouraged in order to appeal to use another medication. This can become problematic especially if you change to a new health plan which has instituted a step therapy program; despite perhaps a long history of using a particular medication, the plan could dictate a medicine change.

For government programs such as Medicare and Medicaid, step therapy programs are less prevalent, but caution must be taken when selecting plans. Because Medicare Advantage (MA) plans are managed by commercial payors, they may be more at risk of implementing step therapy programs, but the MA plans must adhere to Part B guidelines for factor medications and must ensure they do not disrupt ongoing Part B drug therapies for beneficiaries. Under new policy guidelines, step therapy can only be applied to new prescriptions or administration of Part B drugs for beneficiaries who are not actively receiving the affected medication. This means that no beneficiary currently receiving drugs under part B will have to change their medication.


What can BioMatrix do to help with a problem with step therapy?

If you’re facing step therapy, our access team at BioMatrix can help you navigate the process. We can help you identify, collect, and submit the documentation required by your health plan and can help file for an exception in order to maintain or return to your original therapy.


Where can I learn more about step therapy?

The Alliance for Patient Access has created a succinct overview for understanding step therapy. Scan the QR code or visit the link to watch.



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Patient Navigation: Patient Assistance Programs (PAPs)


This article defines patient assistance programs (PAPs) and provides helpful information for who may be eligible.


What are patient assistance programs (PAPs)?

Patient assistance programs (PAPs) help people without health insurance and those who are underinsured. These programs are often managed by pharmaceutical companies, nonprofits, and government agencies. PAPs may cover free or low-cost medicines if you don’t have insurance, have lost your insurance, or are underinsured and can’t afford your medicine.

Pharmaceutical manufacturers often sponsor PAPs that provide financial assistance or free product for eligible individuals. PAPs may also provide assistance to Part D enrollees and interface with Part D plans by operating “outside the Part D benefit” to ensure separateness of Part D benefits and PAP assistance.


Who should enroll in PAPs?

Anyone who is without insurance, is underinsured, and is unable to pay for their medication should consider a PAP. PAPs were created to ensure continued access to life-saving medicines. 


Are PAPs the same as copay assistance programs like copay cards?

No. PAPs are intended only for the uninsured or the underinsured. PAP programs provide drugs free or at a discount to patients. Copay assistance programs are for commercially-insured individuals and work in tandem with the patient and the insurance plan to help cover a medication’s out-of-pocket cost.


What can BioMatrix do to help connect patients to these resources?

BioMatrix can provide information on available PAPs related to your medication and can connect you to those resources.


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Patient Navigation: Understanding Medicare Eligibility


This article defines Medicare eligibility and provides helpful information for navigating Medicare eligibility.


Am I eligible for Medicare?

You are eligible if you are 65 or older, under 65 with a disability, or have end-stage renal disease.


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.


What if I am still working at 65?    

If you or your spouse are still working at a job with more than 20 employees and have insurance, you can wait until you or your spouse stops working (or lose health insurance if that happens first), and you won’t pay a late enrollment penalty for Part B. Your job-based insurance pays first, and Medicare pays second. If you or your spouse’s employer employs fewer than 20 persons, you need to verify with the employer if you need to sign up for Part A and B because your job-based insurance may not cover the costs for services. If you or your spouse are still working and have non-job-based insurance (Medicaid or ACA Marketplace), the rules vary on coverage with Medicare, and you will need to answer a few questions to determine your coverage. 


What if I return to work but am an under-65 disabled Medicare recipient?  

Social Security’s Ticket to Work program allows beneficiaries an opportunity to resume their working careers. If you earn under $1350 during the Trial to Work period, your benefits will remain intact for those 9 months. If you return to work and begin earning more than $1350, you will lose your SSDI benefits, but you will retain premium-free Medicare Part A and B coverage for up to 93 months. After 93 months, beneficiaries will then have the opportunity to purchase Part A and B coverage if they continue to have a disability. 


What can BioMatrix do to help with my Medicare eligibility?  

BioMatrix can check your Medicare benefits and let you know about your eligibility and anticipated coverage. From there we can provide additional information based upon your needs


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Patient Navigation: Understanding Medicare Coverage


This article outlines Medicare coverage including Original Medicare Parts A and B; prescription drug coverage Part D; Medigap/Supplemental Insurance coverage; and Medicare Advantage.


What is Medicare Part A and B, and how much will I pay?

Part A is considered hospital insurance and covers in-patient care. There is no premium if you have 10 years of qualified work. For hospitalizations, a per episode deductible is in place for $1600 in 2023. Once met, days 1-60 are covered at 100%; then Medicare sets the coverage amount at days 61 and beyond.

Part B is considered medical insurance and covers physician services, outpatient care, home health care, and most infusion drugs, including factor. The average premium is $165 for 2023 and the deductible is $226. At that point, Part B pays 80%. Factor therapies fall under Part B coverage.


What is Medicare Part D and how much will I pay?

Part D is the prescription drug plan. Plan costs are based on income and range from $0-$77.90 with the average plan costing $43/mo. Your out-of-pocket costs depend upon your prescription as Medicare uses a tier system to determine patient cost. The yearly deductible before Medicare begins paying anything is $505 for 2023. When catastrophic coverage begins (at $7400 in shared costs), you will pay 5% of drug cost for the rest of the year.


What is Medigap and how much will I pay?

Medigap is supplemental coverage for costs not paid for by Medicare Part A or B. This includes the 20% of Part B but does not include the 5% for Part D plans. It also covers foreign travel, which Medicare does not cover. These plans are state based and managed by private insurers. Available plans are A-N and fluctuate in cost from $50-$500/mo. depending on coverage options.


What is Medicare Advantage, or Part C Medicare, and how much will I pay?

Medicare Advantage plans are managed by private companies and offer inclusive Part A and B coverage. Many add prescription drug coverage (Part D), and some include perks like gym and health behaviors discounts. These will be familiar and are run very similar to private insurance plans. Premiums, copays, and deductibles vary from plan to plan. The average premium in 2022 was $18/mo. The average out-of-pocket cost for Medicare Advantage subscribers was $4,972.


Should I choose original Medicare or Medicare Advantage?

This depends. Medicare Advantage can have lower out-of-pocket costs, but their networks are limited and may not include all the providers you need. It’s also more difficult to change to other plans once an Advantage plan is selected; certain penalties may apply, and you will lose guaranteed issue for Medigap plans should you wish to return to Original Medicare. You have to assess your healthcare needs, the access to providers in the Advantage network, and the savings you may (or may not) have with an Advantage plan.


What can BioMatrix do to help with Medicare?

BioMatrix can check your Medicare benefits and let you know what your anticipated costs will be based on your plan choices. From there we can provide additional information based upon your needs.


Where can I learn more about my Medicare benefits?

You can call Social Security at 800-772-1213 or access the handbook here.


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Patient Navigation: Understanding Medicare Coverage Gaps


This article explains the coverage gaps in Medicare Part B and Part D plans, including the “donut hole.”


What are the primary coverage gaps within Medicare?

Each Medicare plan comes with a deductible which must be met before Medicare begins paying. Part B has a coverage gap of 20% where Medicare only pays 80% for provider services (including factor therapies) once the deductible is met. Part D has a gradient of limited coverage once the deductible is met and until the subscriber enters catastrophic coverage.


What is the Part B coverage gap?

In Part B plans, Medicare covers 80% of costs for providers, including procedures and Part B infusion therapies like factor. To cover these costs, you may be eligible for a Medigap/Supplemental Insurance policy. Depending on your income level and resources, you may also be eligible for assistance through the Qualified Medicare Beneficiary (QMB) program or the Specified Low Income Medicare Beneficiary (SLMB) program.


What is the Part D coverage gap?

Often called the “donut hole,” this is a euphemism to describe a coverage gap where, after Medicare has paid a portion of shared costs, Medicare temporarily limits its coverage. During that stage of coverage, you may pay more for drugs than you had previously. When the coverage gap (donut hole) ends, Medicare will require a flat 5% shared cost on prescription drugs.

In Part D, you will first pay the deductible, $480. At that point, Medicare will begin sharing the cost based on their drug tier cost-sharing formula. Medicare will share the cost until $4660 has been reached, and the donut hole begins. From there, you will pay 25% of the drug cost until the shared cost reaches $7400. At that point, you are in “catastrophic coverage”, and Medicare will pay 95% of drug costs; you will be responsible for 5% for the rest of the year.


What can BioMatrix do to help with the coverage gaps in Part B and Part D?

BioMatrix can check your Medicare benefits and let you know what your anticipated costs will be based on your plan choices. From there we can provide additional information based upon your needs. By looking at your income and resources, we can identify support plans you may be eligible for.



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Patient Navigation: Medicare Coverage Resources


This article outlines the four Medicare savings programs and provides helpful information for determining eligibility.


What programs exist to help cover my Medicare costs?

Medicare offers 4 general programs to help patients cover their out-of-pocket costs, which include premiums and cost-sharing for provider services and medications. Program eligibility is based on income and resources (checking and savings accounts, stocks, and bonds).

  • Qualified Individual Program (QI): Beneficiaries earning less than $1549/mo. and resources under $8400 may be eligible for the Qualifying Individual program (QI). This helps pay for Part B premiums only. States approve this on a first come, first serve basis. Ineligible if you qualify for Medicaid. Can pay for up to 3 months retroactively.

  • Qualified Medicare Beneficiary Program (QMB): Beneficiaries are eligible for QMB with incomes less than $1153/mo. and resources under $8400. This program covers premiums for Part A and Part B, deductibles, coinsurance, and copayments for services Medicare covers. It does not offer retroactive payment.

  • Specified Low-Income Medicare Beneficiary (SLMB): Beneficiaries are eligible for SLMB with incomes less than $1379/mo. and resources under $12,600. This covers Part B premiums. Can pay for up to 3 months retroactively.

  • Qualified Disabled Working Individual Program (QDWI): Disabled beneficiaries are eligible for QDWI with individual incomes less than $4615/mo. and resources under $4000. This pays for Part A premiums only.


What other resources exists to help cover my Medicare costs?

Several non-profits offer resources.

  • Accessia Health (800-366-7741) helps cover Medicare premiums.

  • The PAN Foundation (866-316-7263) helps cover premiums and out-of-pocket costs

  • The Assistance Fund (855-845-3663) helps with copayments, coinsurance, and deductibles.


How can I cover my out-of-pocket costs if I am ineligible for any of the Medicare Savings programs?

The primary step would be to see if you are eligible for a Medigap/Supplemental Insurance policy. This covers Part A and B costs not supported by Medicare.


What can BioMatrix do to help with Medicare coverage resources?

BioMatrix can check your Medicare benefits and let you know what your anticipated costs will be based on your plan choices. By looking at your income and resources, we can identify support plans you may be eligible for. We can also investigate your state rules regarding Medigap coverage plans and determine your eligibility.


Where can I learn more about the Medicare savings programs?

You can learn more about Medicare savings programs here at this link.



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Patient Navigation: Understanding 504 Plans


This article defines 504 accommodation plans and indicates who should consider them.


What is a 504 accommodation plan?

A 504 accommodation plan is part of a federal law that allows children with special needs such as chronic health conditions to better access learning experiences at school. It is different than an IEP plan. A 504 plan provides additional assistance in the classroom as well as modifications and services that ensure a child’s access to education is equal to the other students. The law was designed to protect the rights of individuals with disabilities in programs and activities that receive federal financial assistance from the U.S. Department of Education. Section 504 provides: “No otherwise qualified individual with a disability in the United States . . . shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.”

The Section 504 regulations require a school district to provide a “free appropriate public education” (FAPE) to each qualified student with a disability who is in the school district’s jurisdiction, regardless of the nature or severity of the disability. Under Section 504, FAPE consists of the provision of regular or special education and related aids and services designed to meet the student’s individual educational needs as adequately as the needs of non-disabled students are met.


Who should consider a 504 accommodation plan?

Anyone with a chronic condition who receives education from any federally-funded program should consider setting up a 504 accommodation plan. This provides a safety net for the student and ensures minimal disruptions in a student’s education regardless of their condition, which may result in time missed or other school-related disruptions.


What can BioMatrix do to help with 504 accommodation plans?

BioMatrix can provide help with understanding the 504 accommodation plan and work with you and your school to put a 504 plan in place.


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I’m Not Giving Up Yet!

By Edward Burke


My maternal grandfather had severe hemophilia A. He was injured while working on a construction site. The doctors thought he was having an appendicitis attack, but he was actually bleeding into his abdominal cavity and consequently passed away at age 35. This was when my family became aware of the hemophilia in our lineage.


Since my mom knew she was a carrier of hemophilia, she explained to my dad that if they had sons, there was a 50/50 chance of them having severe hemophilia. Sure enough, all three of us had it! When we were young, we would often wake up at night with an elbow hurting or blood everywhere from a tooth coming in. My parents had their hands full.

I was the first to self-infuse in my family after I learned at hemophilia camp. I was always giving my brothers their doses as well!

My brother Michael was four years younger than me. He went out for high school wrestling. At a match, he made a 13 second pin in the heavyweight division, making the sports page of our local paper. Our pediatrician, who never treated us for hemophilia, saw the news article and called the school. He alerted them that my brother should not be allowed to wrestle due to his hemophilia. Instead of being applauded and congratulated, Michael was thrown off the team. 

For two years in my early 20s, I was secretly part of a men’s ice hockey league. Mom didn’t know it, but my dad did, and would come watch me play. He would remind me,  “Don’t tell your mother!” While my mom watched TV, I would drag my bag of hockey pads and sticks upstairs. One night when I came home, she decided to investigate what all the noise was about. When she saw me with my gear, she said, “What’s this?” I told her I had good news and bad news. She asked, “What’s the bad news?” I told her I played ice hockey. She said, “Oh really? What’s the good news?” I told her, “I’m team captain, and we’re on a championship run!” She looked at my father to ask if he knew about this, but he was out of the room and up the stairs! He knew when she saw the hockey equipment he had better run! During a game, my knee twisted up, and it just wouldn’t stop bleeding. That was the last time I played. The injury resulted in my first knee replacement.

My older brother James passed away at 24 years old in June of 1980 following an accident. My father was destroyed – he died of a broken heart just two years later.

Michael and I were diagnosed with HIV at our Philadelphia treatment center in 1985. My mother was already crying when we walked into the room. We were given the news that we tested positive for HIV and that we had about seven years to live. I asked, “So you’re saying by 1992, my life will be over?” The doctor explained those were the statistics. In a way he was right… in October 1992, I got married! Joking aside, thirty years with my wife and she has seen a lot of this too, having attended many blood brother funerals. Sadly, my youngest brother, Michael, passed away at the age of just 35 in 1997 – his death tagged as hemophilia-related AIDS.

My mom is currently 88! She is still very much a hemophilia mom. Everything her sons went through continues to weigh heavy on her heart.

Sixty years of life with hemophilia and I have a pretty good pain threshold, but the bleeds hit hard. One time I was driving my friend to the airport and almost took my car out of the lane because of a breakthrough bleed in my elbow. The bleed was so bad I couldn’t move my hand to steer the wheel. Taking a weekend trip to attend a meeting or event and I feel the effects of aging. I was in Nashville, returned home and waited three days for my knees and ankles to get back to normal just from being on foot and walking around the city.

As we age, we learn things like pain may feel like a bleed, but it’s not a bleed—it might be arthritis or just a muscle ache. It feels like I wake up with something every day. I can still bleed into my artificial joints! The pain is sometimes intolerable.

Living long enough to have arthritis is not something I had banked on. I’ve had all these target joints and some just don’t work as they should—like my right pointer finger that doesn’t bend like it’s supposed to.

But the most difficult part of growing older is when we lose a friend. I try to stay close with the friends who are still here. Everyone young enough not to have been exposed to tainted clotting factors should watch the movie And the Band Played On. It will serve as a reminder that the “hemophilia holocaust” shouldn’t have happened to our community. Even with advances in medical treatment, HIV/AIDS and hepatitis C continue to claim the lives of people in our community who were exposed to tainted blood products in the 1980s.

One misconception is that people with hemophilia have “thin” blood so they can’t have heart problems – WRONG! My second AFib (Atrial Fibrillation) put me in the emergency room. My daughter was outside the ER yelling at the medical staff to let her in with my clotting factor because although she didn’t know what was wrong with me, she knew I needed to get factor. The cardiologist put me in the ICU and told the nurse to start blood thinners immediately. All I could say was, “HOLD ON, I AM A BLOOD THINNER! I DON’T CLOT!” My cardiologist told me, “Hemophilia really puts a kink in the armor and changes how we can help you.”

In addition to AFib, I have psoriatic arthritis. It’s difficult for a cardiologist or rheumatologist to treat with their go-to medications. For example, the medication I take for the psoriatic arthritis treats the symptoms, but it also lowers the immune system. That complicates things when combined with my HIV medications. As we grow older, other medications may be problematic when combined with medications we take for hemophilia and HIV.

Many times, I have been wakened in the middle of the night. It’s my daughter calling. Every three or four weeks, she wakes up from a bad dream and has to check on me.  I tell her I have no plans to go anywhere anytime soon and that I feel fine. It’s heartbreaking to know your daughter is so concerned about your health that it keeps her up at night.

In my retirement, to stay busy and make a little extra money, I signed up with a talent agency and have been doing movie parts and voice overs, and I play guitar and have done performances. I enjoy trying to entertain others. My dream for retirement was to keep playing and entertaining, but it has become more difficult as my left hand’s ability decreases as the arthritis increases. I often ask myself, “Is it a bleed or is it arthritis?”

These are the things we deal with as we age, but we must keep living life to the fullest! I am still active in the bleeding disorders community and will participate in a hemophilia walk in the fall. I enjoy spending time with my wife and watching my much-too-beautiful 21-year-old daughter grow into a mature young woman.

My advice to the younger set is to always stay positive! Be active, and stay engaged in the bleeding disorder community. Make friends. Reach out to your community brothers and sisters when you’re having a problem—they will always be there for you! My close blood brothers and I have been saving each other’s lives and sanity for years!


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