Aliza Ben-Zacharia Describes the Cost-Related Barriers to Access for Patients With MS

Cost-related barriers to access are a major problem for US patients with MS that will hopefully be addressed through innovations in medication affordability, said Aliza Ben-Zacharia, DNP, ANP, associate director at the Center for Nursing Research and Innovation at Mount Sinai.

Transcript

How do you see the cost of MS therapies impacting patient access or patient outcomes?

It's a major problem I think in the United States. Many countries have socialized health—people know I was born in Israel; we have socialized medicine. I think here if number 1, you do not have medical insurance–you cannot afford any medical treatment–you cannot afford the medication for MS and that definitely will affect your outcome. You don't have medication–some patients you'll be surprised, they space medication–they take them every other day because they want them to last forever. It's a practice that is very sad to me because I think everyone should be entitled to medical care and medication, however, it's a fine line. These pharmaceuticals invest so much money in research, and they actually publicize their research and develop new medication for the whole world to use. So, everyone followed the United States, everyone gets the medication from our research, but how do you control that cost of medication? How can you change that you recognize all the efforts, the science, and the money that they put in clinical research, and then once it's marketed into the population, I think it's unheard of that the medication costs more than $70,000 a year.

Many patients cannot afford it, unless they have a good vocational place, a good job that they can have coverage for this. It's surprising, but not so. Some pharmaceutical company can help patients to receive this medication for free, but they cannot help people with governmental insurance, for example. So, I think the cost is extremely high, and I think as a country, we need to do something. We need to control the prices of medication and make sure that patients have access to these medications. The bottom line, many patients do not have access, and then they rely on pharmaceuticals. Those that provide them with medication, and some pharmaceutical will provide the medication with no cost for patients, but then you have to be on their drug—if it's not the most appropriate drug for you. So, I think it's a very costly system–definitely affect access to medications and outcome of patients. If you cannot be on this medication, you have very poor outcome and you have no control of the disease.

I hope that the future will change. I'm not sure how to really change the system, but I think there was some idea to subsidize medication; but I think something needs to be done to really make these medications affordable for patients. I'm not sure that the way to go is with generic and biosimilar because these medications were not tested in patients. I feel uneasy sometimes when I prescribe glatiramer acetate and the insurance says, well, they have to go on the generic. We have no choice at this point—patient must go on generic. I think the FDA, because it's such a chronic disabling disease and affects patients in every arena–physical disability, cognitive disability and emotional. So, it's all areas of their being of their life, and they allow and approve medication without clinical trial.

I think glatiramer acetate, for example, has such a unique mechanism—different amino acid, in a different structure, in a different order every time–how can you duplicate something so complicated? I think the FDA should say okay, we’ll allow generic; but they need to have some kind of clinical trial, maybe less patients because they need to lower the price of the clinical trial to allow a generic to come to market. I think something needs to be done, and really enforce clinical trial for every generic, especially for diseases such as MS. [MS] is a chronic disease, lifetime, [that] we don't have any queue, and the disability accumulates over time–all these aspects of care.