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Insurance and Rare Diseases

Published on April 2, 2010

Benjamin Greenberg:

Our US healthcare system is great in a lot of respects and unfortunately throws up a lot of obstacles to care. One of the things where it’s an absolute disaster is in rare conditions.

Benjamin Greenberg:

Sitting as I was just a few months ago in a room with a 20 year old getting their diagnosis of neuromyelitis optica, they were doing quite well, and we talked about keeping them healthy and went through the variety of drugs that we could use. The choice for a variety of personal and medical reasons was to try this drug rituximab. We put in for the approval and were denied, which we do on a regular basis. I have my letter ready to go upon the denial, send it in. I get on a phone with a physician at the company to discuss why we should approve it in this special case.

Benjamin Greenberg:

The conversation inevitably goes something like this, “This drug is not FDA approved for neuromyelitis optica.” I say, “Fine, would you give me a list of FDA-approved drugs for neuromyelitis optica?” And there are none. There isn’t a single drug in the country that carries the specific label for neuromyelitis optica. So to hold that as a standard for rare diseases, what the FDA approves and doesn’t approve, is a cost-cutting measure on the part of insurance.

Benjamin Greenberg:

So we are faced on a weekly basis with telling patients they will not have access to a medication despite being insured, despite being employed, despite being healthy, because it’s not on the list of approved drugs. We move to other agents if we can get those approved.

Jesus Loreto:

Through our insurance, we cannot get rituximab. That’s a long story. But I got on the phone with my brother. He’s a medicine doctor in Venezuela. So we found out that we could find rituximab there for free.

Maria Elena Loreto:


Jesus Loreto:

I found here, I don’t know if I can say this, but it’s very expensive to buy here. We could buy it, we could give it to the patient, but it’s very expensive.


How much is it, Jesus?

Jesus Loreto:

$21,000, one shot. We have to give her two shots every six month. So what we do is we travel to South America every six month, one week to prepare her so she can settle down. I find the drugs through the Social Security. We go to a clinic, so she gets infusions for two weeks and give the treatments here. But she was doing her rounds for rituximab for four weeks straight; and since then, she has been relapse-free for two years.

Benjamin Greenberg:

Unfortunately on paper, a lot of us “could afford medication,” but laying down $10,000 to $20,000 a year would make significant changes in people’s ability to put food on the table, pay for their car, a variety of things. So people are faced with the choice between their health and certain day-to-day or life or family obligations that they have, and it’s unfair.

Benjamin Greenberg:

I can say almost universally at the clinical centers who are here, we have found ways to get patients on medicine. It may not be our first choice, but we’ve gotten them on some sort of medicine to do whatever we can to keep them healthy. But it’s a nightmare. To be a patient being told one day you have a rare disorder and then to spend weeks or, in some instances, months waiting to hear if the drug that’s being prescribed is going to be given to you or not is a new form of torture that we really need to get rid of in our system.


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