When it comes to finding resources, sickle cell is one of the most under-represented chronic medical conditions. There are over 90,000 people affected with sickle cell in the United States, and yet, other orphan diseases that affect way less people get far more funding and support. Until things turn around, sickle cell warriors will have to advocate for ourselves to find the money, support, and resources we need to combat the chronicity of this condition,pay for these overly expensive medications and hospital bills.
This series will cover the different resources we have in the United States. There are many new laws, programs and organizations, that can help us pay for our medical bills, insurance, medications etc. that most of us don’t know about. Most of this was collated by our great researcher Lakiea Bailey. You can also hear Part 1 of her Patient Advocacy Talk with WDC (What’s Da Count) on Blog Talk Radio HERE.
Roadblock 2: Paying for Expensive Medications
Sickle cell medications do not come cheap. With copays of 15-30% on prescriptions, your out of pocket costs can grow drastically. If you are on a fixed income, or don’t make much, it can get hard. Paying for medications can become an exasperating battle but here are some resources that might be able to help.
Due to multiple blood transfusions, one of the most common complications with sickle cell is Iron Overload. If not addressed and treated promptly this could be fatal. If you have iron overload, the oral iron chelator Exjade runs about $8500/month. It is just way too expensive. With insurance, this is manageable, but without? You are pretty much screwed unless you made more than $120,000/year. Since most of us aren’t that fortunate, how can we pay for Exjade? Most people in this predicament just stop taking the drug altogether, and then we end up with the lethal and often fatal complications.
When you do get online and do research, you find out fairly quickly that there is assistance for every other expensive chronic disease in the book—except for sickle cell. Fortunately for us, LBailey found a way to sneak us in there.
Plan A: The Chronic Disease Fund. Visit www.cdfund.org or call (877)968-7233
The Chronic Disease Fund® is an independent 501(c)(3) non-profit charitable organization helping patients with chronic disease, cancers or life-altering conditions obtain the expensive medications they need. They are not financed by the government and hence only service limited diseases. They do not cover sickle cell disease, but there is a choice for Chronic Iron Overload. To qualify, you have to make less than $50,000/year. They will pay for Exjade or Desferal. Your out of pocket cost will be only $10/month. To apply Click HERE.
Plan B: RxOutreach. Visit www.rxoutreach.org or call (800)769-3880
If you are on Medicare/Medicaid or on any insurance plan, there is a copay attached to every prescription you fill. In addition, some plans do not pay beyond a certain amount of pills a month, and you might need more due to our illness. RxOutreach fills the void. You qualify based on income, and they offer you medications at a heavily discounted rate. Therefore, if you do have to pay for pills out of pocket, you won’t have to pay such grossly inflated prices. Most drugs on their roster can be purchased for $20 for a 90-day supply. The only drawback is that once you are approved, you have to mail your prescription and copay to them, and they mail the medications to you. Also they don’t cover pain medications, but they do cover stuff like Hydroxyurea, Zofran, Xanax, heart, blood pressure AND diabetic meds.
View eligibility table HERE.
View full list of medications covered HERE.
Thank you LBailey for your tips and extensive research. To everyone else, if you have found more resources, please comment below or send me an email.