How Can Sickle Cell Warriors and Families Advocate for Lower Cost Therapies?
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In this program:
Sickle cell disease therapies can be costly for some patients. Dr. Marwan Shaikh, hematology nurse practitioner Maya Bloomberg, and Carla Lewis explain ways that sickle cell patients and care partners can help reduce the cost of sickle cell disease treatments.
Transcript
Ariqa Everett:
Why is the cost of care so high for one of the most common genetic disorders in the world, and how can patients and families advocate for lowering the cost of sickle cell disease drugs?
Dr. Marwan Shaikh:
So one thing that comes to mind when I think about this is first we have to differentiate is the cost of care different between sickle cell disease and other diseases.
If you look at any new drug across the market, it's going to be pricey. The most expensive drugs on the markets are in other diseases, not sickle cell disease, so any time there's a new drug comes to market, it's going to be expensive, you have to have development cost, mark whatever you want to add into there, it's going to contribute to that extra cost, and over time, when patents run out or whatever, over time that therapy cost should come down, so I think that's one thing to differentiate. The other thing is why costs are so high, so if you look at why costs are so high, hydroxyurea (Hydrea) is relatively cheaper medicine. So if someone's only on hydroxyurea that's not the issue, it's readmissions, it's hospital ER visits, it's getting back into the hospital, 10 days in hospital is much cheaper than 20 days in the hospital. So what's adding to the cost is not necessarily so much the drugs itself, because that's already going to be there, these new drugs, but it's all these extra doctors’ appointments, it’s all the readmissions. And how do you resolve that? That's what we talked about today, it's compliance with medicine, having a good transition program, having a good education, being an advocate for yourself, all of these things are going to be the biggest factor to reducing not only your patient cost, but the cost of the health system.
Ariqa Everett:
Exactly.
Carla Lewis:
Medicaid has a meeting, and they review new medication, and I think that it's important to have the patient and caregiver voice at those meetings being able because there are certain medications that they may not consider that is particularly necessary. And as necessary to cover the cost, we have new medications come in, I definitely recommend attending those meetings when you possibly can and be able, even as health providers, being able to speak up on the benefits of these medications and how it can potentially help patients. So we want to make sure patients can have access to these medications, especially when we know a high percentage of patients are on Medicaid, and we need the approval of Medicaid in order to...in order to be basically financing these medications that are pretty expensive, but they're definitely necessarily beneficial and helpful for patients.
Maya Bloomberg, APRN:
And a lot of the manufacturer patient assistance programs, like the co-pay systems don't qualify for Medicaid, Medicare, or any government's insurance. So it's definitely a topic that needs to be spoken of. I think when they, as you mentioned, talking about drug prices, they look and see what is the healthcare utilization for somebody with sickle cell, I think I read on it was like $900 million per year, is it million or billion, I’ll have to fact check myself, but it's a lot of money that's spent each year, collectively for sickles between hospitalization rates and the complications and readmission rates, so when they're looking at what the price of a medication, they're putting a dollar value,well we’re going to be able to prevent these hospitalizations and prevent and extracts on the dollar value based on that.
But again, the more rare condition, the fewer patients who are going to be treated with that drug, so it's obviously going to be more expensive, but the key is to look, is it a comparable price to the other medications within that disease state, as you mentioned, versus is it completely outrageous, but drug prices in America is ridiculous to begin with. I’m not justifying it, and I don't agree with it, as long as my patients can access it and they can get it approved by their insurance or get through some third party foundation or through the manufacturer, I’m happy, but access is obviously a big issue and you want to make sure that our patients can afford it. Because we were looking at the major population of sickle cell patients, a lot of them do fall under Medicaid. I think you said 60 percent are Medicaid so lower socio-economic status, and it's harder to afford certain life-saving, disease-modifying treatments. So in order for these patients to have the best potential life we kind of have to give the tools for success, so definitely keep advocating and speaking up and going to Capitol Hill.
Dr. Marwan Shaikh:
Another thought is the cost to take care of a sickle cell patient over the entire lifespan is in the millions of dollars for one person. So you add that times 100,000 people you’re talking hundreds of billions of dollars just to take care of one generation of sickle cell patients. So there's a huge opportunity for hospitals that will produce that cost, and so there was one study 2019 where they implemented a transition program, and they were looking at high-risk patients, and they had this multi-step approach where you know you would target certain patients who are the ones who are being admitted more frequently, so you would put extra resources on them, and it only came down to about 10, 15, 30 patients. It wasn't a huge amount. I see on a regular basis, recurring admissions is like three or four, and everyone else is in clinic and doing...so there's a smaller number of patients who are having readmissions and you target them. Their goal was over five years to reduce hospital month of state by 40 percent, within four years, they reduced it by 60 percent, and over a year cost savings to the hospital, it was 555,000 a year that they save the hospital. So the hospitals, the administrators can do a really great job, it's not very complicated means, but easy things can help to reduce significant cost for them and for patients.
Maya Bloomberg, APRN:
We're talking about cost, you're talking about how much your cost in a life term, so they're using a lifetime data for how much it costs for sickle cell patients to determine what gene editing and gene therapy is going to cost, so that's why doing the clinical trials, if there's a Phase III, take advantage of it because it's gene editing and they've already put a dollar on and it's multiple...it's more than two million dollars. So how is the insurance going to cover this when a person can change plans any time that they want, so there are a lot of considerations that are going into just treating and caring for sickle cell patients, and unfortunately dollar signs are involved
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