A diagnosis of myelodysplastic syndrome can be shocking in many ways. Not only do you have a type of blood cancer, it’s also one that can be very expensive to treat. Drugs and other therapies typically cost tens of thousands of dollars per year.
In a perfect world, money would not be a factor in your treatment choices. But many people with myelodysplastic syndromes (MDS), a group of blood disorders, must keep financial considerations in mind.
Supportive Care Treatments for MDS
Supportive care may be the first treatment your doctor suggests for MDS. It treats the symptoms of MDS, especially anemia. But it doesn’t slow down the course of the disease. Supportive care treatments include:
Erythropoiesis-stimulating agents (ESAs). These drugs are also known as growth factors.
Blood transfusions. More than 40% of people with MDS get regular red blood cell transfusions during their disease, according to research.
Iron-chelating drugs. These medications help your body get rid of the excess iron that frequent transfusions bring into your body. When too much iron builds up, you can have serious health problems, including organ damage.
Other anemia treatments. Among these is a prescription medicine called luspatercept-aamt (Reblozyl) for certain people with MDS who need regular blood transfusions.
General Costs for MDS Supportive Care
The most recent research available was published in 2008, more than a decade ago. It found that the average yearly cost of anemia-altering drugs for MDS was around $63,577 – for one person.
The same study looked at the costs of transfusion plus iron chelation treatment in people with MDS. Annual yearly estimate: $41,412.
A more recent study, published in 2013 in the American Journal of Blood Research, had similar numbers. In transfusion-dependent people with MDS, annual medical costs were around $29,600-$51,000 per year.
Drugs That Slow MDS Progression
In addition to supportive care treatments, several drugs are available to treat MDS. They may slow its progression to leukemia. But they come with a high price tag, too: thousands of dollars per year. And you still may need transfusions. But they cost less than transfusion therapy, and they offer a more convenient way to treat MDS.
Insurance Coverage for MDS Drugs
The sticker price of a medication is not necessarily what you have to pay for it. Different things affect the final cost to you. And you do have some control over your possible drug savings.
If you have the means, shop for a good insurance drug-coverage plan. Some things to keep in mind when you do:
- If you take certain expensive drugs, look for plans that cover them.
- If you take a lot of generic drugs, consider a plan with tiers that charge nothing or have low copayments for generics.
Hospital Financial Assistance for MDS Treatment
If your care is through a nonprofit hospital, it will have a financial assistance program. The hospital may not tell you when you are eligible for this aid, so you’ll have to research the rules for your local hospital.
Hospital financial assistance is usually based on your income and assets. You may get as little as 10% off the bill, or you may not have to pay a dime.
You should also know this financial help is not just for people who have lower incomes. If your medical bills make up a big chunk of your annual income, you could qualify for assistance.
Organizations Offering Financial Assistance for MDS Treatment
Many organizations can help you directly with the cost of MDS care. If they can’t, they will likely steer you in the direction of other resources that can help. These are a few examples.
Medicare prescription drug program: Provides information on programs that offer discounted or free medication, plus other information.
Medicaid prescription drug program: Provides detailed information on Medicaid, including financial assistance.
The Assistance Fund: Offers financial support for high-cost medications for people with chronic illnesses.
Good Days: They provide copay assistance for many patients with private insurance or a Medicare Part D plan. They can also refer you to other resources if they can’t help you directly.
CancerCare: Although they don’t provide financial assistance, they can offer you support and information to help you manage the financial challenges of cancer treatment.
Many cancer organizations offer direct assistance, including the Leukemia and Lymphoma Society and the Leukemia Research Foundation.
Pharmaceutical Assistance Programs for MDS Medications
Drug companies offer a range of financial support options. Some help with out-of-pocket prescription costs. Others help with insurance reimbursement as well. Some extend assistance to commercially insured patients, while others lend a hand to those who are uninsured. Some offer financial support only for certain drugs.
Once you know which drug you plan to take, you can find out what support you may be eligible for. The best way to do this is to contact the financial assistance program for the maker of the drug, or have an advocate do this for you.
Other Considerations for High-Cost MDS Treatments
Cost shouldn’t be your sole focus when you decide on an MDS treatment plan. You’ll also want to consider the possible risks and benefits of treatments in light of your individual health. For example:
- What is your survival outlook? The average survival rate for lower-risk MDS is around 6 years. The average survival rate is approximately 5 months for high-risk MDS.
- Do you have primary or secondary MDS? The primary form has no known cause. The secondary type develops from a known cause, such as cancer treatment. Secondary MDS is less likely to respond to treatment, and it often develops into leukemia.
- If you’re like most people with MDS, you’re a senior. How is your health apart from MDS?
These topics aren’t easy to think about, much less discuss with your doctor. But they can be useful in guiding your treatment decisions after an MDS diagnosis.
Photo Credit: DNY59 / Getty Images
American Journal of Blood Research: “Costs and quality of life in patients with myelodysplastic syndromes.”
FDA: “Information on Erythropoiesis-Stimulating Agents (ESA) Epoetin alfa (marketed as Procrit, Epogen), Darbepoetin alfa (marketed as Aranesp),” “FDA Approves New Therapy for Myelodysplastic Syndromes (MDS) That Can Be Taken at Home.”
Journal of Toxicology: “Iron Chelators in Treatment of Iron Overload.”
Reblozyl: “Your Road to Fewer Transfusions.”
Medicare.gov: “6 tips for choosing Medicare drug coverage.”
Patient Advocate Foundation. “Negotiating Medical Costs.”
MDS Foundation: “The MDS Foundation’s Guide to Assistance Programs in the United States,” “What is MDS?”