There are five hemophilia treatment centers in Illinois that receive federal funding — four of which are located in Chicagoland.
The fifth?
It's just north of Donovan Park, on Northmoor Road.
The Bleeding and Clotting Disorders Institute opened in Peoria in 2010.
Hannah Alani
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WCBU
Independent of a hospital or higher education institution, the institute is a rare recipient of a $25,000 federal grant — key funding that provides access to the 340B drug pricing program.
Last week, Rep. Cheri Bustos (D-IL) toured BCDI to see the impact of those federal dollars. She met with BCDI’s chief financial officer and chief operating officer Becky Burns, as well as BCDI’s associate medical director and associate research director, Dr. Jonathan Roberts.
A member of the National Hemophilia Foundation's research board, BCDI founder Dr. Michael Tarantino happened to be in Washington, D.C., during Bustos’ visit.
WCBU tagged along for the tour, and afterward, interviewed Burns and Dr. Roberts.
The following is a transcript of an interview that aired during “All Things Peoria” on March 17, 2022. It has been edited for length and clarity.
Hemophilia affects at least one in 10,000 Americans. A hemophiliac himself, Dr. Roberts describes the disorder like a game of dominoes gone wrong...
Dr. Jonathan Roberts: You can kind of picture it almost as like dominoes getting knocked over. You have to have all the dominoes in sequence to actually form a clot. So if you have a type of hemophilia … there's hemophilia A, B, there's even more rare types … you're missing one of those particular dominoes, okay? And when you have an injury or trauma, the dominoes can't fall all the way down [and] you can't make a blood clot like you're supposed to. The medicines that we give actually [replace] that clotting factor protein.
Most patients with severe disease will have bleeding into muscles and joints. So over time, that can cause joint damage. … Ankles, and knees, and elbows are common joints that are affected. If you saw someone with hemophilia, they would look like anybody else. And really, we try to prevent joint disease in our patients so that they always look like anybody else. But … we have some patients that still have severe joint disease from their childhood years that are completely wheelchair bound.
Hannah Alani: So you just had Congresswoman Cheri Bustos in for a tour. You were not only able to show her the facilities, and show her the impact of where these federal dollars are going … you were also able to raise some issues to her attention that you've been having. Becky, how did it feel to have the ear of the congresswoman today, and actually, you know, in granular detail, explain to her where the federal money is going … and how many patients need it …?
Becky Burns: We love the opportunity to advocate for our patients and to show the work that we do here at BCDI. We were wonderfully surprised when the congresswoman agreed to come tour the center and see what we do, and appreciate her listening to the issues that our patients are facing, especially when it comes to access to care. Most of our patients are Medicare/Medicaid, we're about 60% public. … Access to care is a huge issue for them, not only through their Medicaid coverage, but also in general; their social determinants of health and other issues they may come up against. And so we, as a center, feel that it's our mission to ensure that they receive the type of care, and the access to care, that they deserve. And so through our 340B pharmacy program, we're able to do that. We’ve actually partnered with the state of Illinois to reduce their overall spend on those patients by millions of dollars a year.
Hannah Alani
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WCBU
… The average cost for an adult patient of hemophilia clotting factor is approximately $30,000 a month. Very few of our patients have an out-of-pocket cost. We work with manufacturer assistance, we also have our own compassionate waiver program for those who cannot afford their medication. You will not be turned away from BCDI because you cannot afford your medication. We will always make sure that they have access to the drugs they need.
Hannah Alani: And BCDI is the only federally funded blood clotting disorder clinic in central Illinois? Or in Illinois, outside Chicago?
Becky Burns: We are the only ones outside the Chicago area. So we serve the entire state of Illinois outside of the Cook County space. We go as far north as Rockford and as far south as Carbondale.
Hannah Alani: Dr. Roberts, maybe you can speak to this. How far is the commute for your patients … do you know who drives the farthest to get to your clinic?
Dr. Jonathan Roberts: We actually have patients that are right down near the Kentucky border, so I would say five hours or more. Which is another thing that we were advocating with the congresswoman about … continuing to offer telehealth services. Because that's becoming vital, especially in the pandemic, to help us have access to our patients.
But we recognize the need for patients have access to us. … We actually now are going as far south as Carbondale a few times per year to help some of those patients that have, historically, had to come such a great distance to come see us.
Hannah Alani: When you are speaking with the congressman earlier you mentioned a specific bill that's going through Congress right now. … Tell our listeners about that.
Hannah Alani
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WCBU
Becky Burns: Yes, House Bill 5801, sponsored by Rep. Rodney Davis (R-IL-13) and Rep. [Donald] McEachin (D-VA-04) is called the ‘All Copays Count Bill.’ There is a move from insurers to not allow patients’ assistance programs or copay cards to count towards a patient's deductible. When you're dealing with high-cost drugs that have absolutely no generic equivalent, it's extremely difficult for most people in this country to meet their entire deductible day one, which is what these copay accumulator programs require.
So rather than using the patient assistance programs that are available to them to help cover their deductible, they're going into their pharmacy, and they're finding out they owe, potentially, $6,000 before they can get that drug. And I don't know many people who can pay $6,000 January 1 for their medication.
So what ends up happening is … the patients leave the medication at the pharmacy. They're still going to experience bleeds, but they don't have the medication at home. So now they have to go to the emergency department. So you're drastically increasing the cost of care by the markup you're going to see in a hospital system. That facility fee for the ED. And you know, in COVID-land that we're just getting out of … you're increasing risks to the patient's health by something that could have been easily avoided. ... Which is why we are so thankful for representatives Davis and McEachin and all the co-sponsors who have jumped on a bill that will really help support these patients who rely on expensive drugs that have no generic equivalent.
During her visit to BCDI, Rep. Cheri Bustos told Burns she and her legislative policy staff would look into House Bill 5801.
Hannah Alani
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WCBU
Hannah Alani: Dr. Roberts, I understand that you are a physician treating these diseases, but you also live with one of these diseases yourself. Can you tell our listeners a bit about your personal story?
Dr. Jonathan Roberts: I have severe hemophilia A. So that's deficiency in factor 8, which is one of the clotting factor proteins. And actually, of the severe bleeding disorders, it’s one of the more common bleeding disorders. It’s an inherited bleeding disorder. Many of our patients have inherited bleeding disorders. You can, with this disorder, without treatment, get bleeding into muscles and joints. Certainly, some individuals have spontaneous bleeding, meaning that no particular trauma occurs … and can have even life threatening bleeding, into the abdomen, or head bleeds, things like that.
Growing up, I had to learn how to administer medication to myself. So that's through intravenous infusion. And so, you know, I was about 10 years old, and I learned how to do that. My personal experience really does help a lot of our patients, especially a new family … maybe there's no one else in their family that has a bleeding disorder. And I can meet them at a time where there's a lot of unknowns, and kind of give them a big picture of what their infant’s life could look like. But we do have patients with bleeding disorders that we diagnose throughout life as well.
Hannah Alani: So you were 10 years old, and doing injections on yourself … like, finding veins on yourself? That probably has to be pretty scary to kids. Are you able – I mean, I'm sure you're able – to help kids feel more comfortable?
Dr. Jonathan Roberts: We actually have a very good multidisciplinary team that will teach them infusions. But I have shared tricks and techniques that I use with patients. You know, when I have a younger individual, like a school-aged child that I'm trying to motivate to learn how to treat themselves … I've even kind of made it a competition, saying, ‘You know, I was 10. You’re 9. See if you can learn how to infuse yourself successfully … before the next time I see you, you’ll have beat me.’ … I think individuals with severe bleeding disorders, you learn from an early age – because this is what normalcy is to you – that if you don't get your medicine, you're worse off. You know, your joints hurt more, you can't do sports like you want to do. So kids usually learn pretty early on.
Everyone's different and every family's support network is different. So really, it's kind of meeting patients where they're at, and trying to find strategies to help them meet their treatment goals.
Hannah Alani
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WCBU
Hannah Alani: How prevalent is hemophilia in America?
Dr. Jonathan Roberts: Approximately, about one in 10,000 individuals; about one in 5,000 males with more severe disease. But actually, the prevalence is probably also underestimated, because we know that women, who are carriers – so it's an X-linked disease; women are typically carriers, because they have two X's, and males are affected because of X-Y … women sometimes can have lower clotting factor levels, such that they have mild hemophilia.
Hannah Alani: Because they're losing blood every month? And that's going to kind of throw things off?
Dr. Jonathan Roberts: Not like that in particular. I think the reason that women have not been diagnosed with mild hemophilia is because there was lack of awareness in the community. And I think that historically, 20 years ago, 30 years ago, women who had children, sons that had hemophilia … no one really asked them about their bleeding symptoms. They may have just dealt with it, because other family members had dealt with it.
And that goes not just for mild hemophilia, but other bleeding disorders that are much more common, like Von Willebrand disease. There's many women that I encounter that tells this long family history of their mom, and their mom's mom, and aunts, will have ‘heavy periods,’ and they ‘just kind of deal with it.’ Maybe they're iron deficient, maybe they're not. Maybe they needed blood at the time of delivery. But it's something that they deal with, and it affects their day to day. You know, iron deficiency can cause fatigue, brain fog, not being able to think as clearly. So we try to treat their symptoms and treat them holistically.
Hannah Alani
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WCBU
Hannah Alani: For any listeners we have who are thinking, ‘Hmm, that sounds like me and my family’ … What are some symptoms to look out for?
Dr. Jonathan Roberts: Yeah, that's the thing, with not just hemophilia, Von Willebrand disease, but other bleeding disorders.
The symptoms can be pretty nonspecific...
- Easy bruising
- Having bruising occur that spontaneous that you don't really know where it came from
- Having large bruises after trauma, like big, swollen bruises that continue to expand
- Having nosebleeds that are lasting longer than 20, 30 minutes, or ever going to the emergency department, or seeing your nose specialist, for nosebleeds
- Having bleeding after things like having your wisdom teeth out, or other dental extractions, dental procedures
- Heavy menstrual bleeding
- Prolonged bleeding after surgeries
...More severe bleeding symptoms, like bleeding into muscles and joints, that typically signals that there's a more severe bleeding disorder. Basically ‘abnormal bleeding.’ And sometimes people need to talk to people outside the family, or other family members who don't experience that, to know what ‘abnormal bleeding’ is. Because, like I mentioned, some families have historically, if it's more mild and no one's had bleeding complications that they've died from, or had other severe hospitalizations, they may just deal with the symptoms, and not really bring it to their physician’s attention.
Becky Burns: One of our huge focuses is education. Letting people know what the signs and symptoms are. You know, clotting can affect anybody. It can affect extremely healthy people. And we've had a family we've worked with, where a young man passed away from a clot, who was healthy athlete. So it's important for people to know when something doesn't seem right with your body, to get it checked out, and to really be aware of what it could be.
Hannah Alani
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WCBU
Hannah Alani
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WCBU
