Looking at the Long Term: Impossible in Our Healthcare System?

I spent last week in Gothenburg, Sweden covering the European Committee for the Treatment of Multiple Sclerosis (ECTRIMS) meeting. Lots of good science, lots of excitement over the new oral and targeted therapies coming on the market to treat this awful disease. But what I want to write about isn’t the science, but about how it will play out in the brave new world of health care in which we all live in today.

For instance, consider the first oral therapy to hit the market: Gilenya (fingolimod), which the FDA approved in September. Last month Novartis announced the price: $48,000 a year.

This is not a rant against the high cost of drugs, however. It is a rant against the inability of our healthcare system to take the long view of the impact of such drugs, a view that is particularly important with a chronic disease like MS that strikes healthy young adults in their early 20s and 30s.

Because what I heard at the meeting was that treating early—as soon as the first clinical signs of MS appear—can slow the progression to disability, and that some of the newer drugs may actually put patients into remission.

This is extremely important given the significant medical and societal costs of the disease. More than half of patients with MS have to quit working within 10 years after their diagnosis, often because of cognitive declines. Studies find that while direct medical costs such as pharmaceutical drugs remain about the same regardless of the severity of a patient’s disease, the indirect costs—lost productivity, need for caregiver support, early retirement—increase sharply as the disease progresses.

This didn’t matter much when we didn’t have good data or drugs on slowing the disease’s progression. Now we have both. And, indeed, a study at the meeting on the economic costs of one of the newer drugs, Tysabri (natalizumab) found that although the drug cost more than the older drugs Rebif (interferon beta-1b) and Copaxone (glatiramer acetate), over time patients on Tysabri actually had lower overall costs than those taking Rebif or Copaxone. Other research attributes lower direct and indirect costs to Tysabri to its impact on cognition. We don’t know if Gilenya will have similar long-term benefits, but we do know that patients are far more likely to take their medicine if they can swallow a pill  rather than give themselves a shot, and that alone could improve overall disability.

But I heard from a US neurologist who only treats MS that insurance companies have made it so difficult for him to prescribe Tysabri that he dreads what they’ll come up with as new drugs come on the market. He has to get preauthorization, justify the need for every patient, and provide extensive follow up paperwork. He has two full-time employees in his office who do nothing but deal with insurance companies for his patients. Patients on Tysabri have to pay far higher out-of-pocket costs for the drug than for older therapies because it is on a higher “tier.” Yes, Tysabri has more potential serious side effects than those older drugs; but it also appears more efficacious in the short- and long-term.

Why don’t insurance companies look at the long-term costs? They have no incentive to. By the time Tysabri begins to “pay for itself” in terms of reduced disability, that patient will likely be covered under a different insurance. So the insurance company that initially paid the high cost for the drug early in the disease won’t reap any of the economic benefits later on.

Compare that to Sweden, which provides comprehensive, cradle-to-grave healthcare coverage for all its citizens. Sweden recognizes the overall economic benefits of early treatment with the most effective drugs, and provides full coverage with no hassle factor for Tysabri, as it likely will for the other MS drugs as they come onto the market.

As long as our healthcare system remains a fragmented mess, however, we will forever be unable to look beyond the short term to consider the intangibles that contribute not only to the overall costs for a disease, but to the overall quality of a person’s life.

One Response to “Looking at the Long Term: Impossible in Our Healthcare System?”

  1. Tracy Shackelford

    Good points, Deb. Not on the Rx costs, but the costs of the disease and its impact on a family overall, I have to put in my plug for Disability insurance for all people who are earning an income and without whose income, a family would suffer. And also buying life insurance early helps to ensure that someone is always able to qualify for this protection. It would be nice if our country provided that safety net (in terms of Rx costs and the long term costs of a disease like MS), but it does not do what Sweden and some of the other Nordic countries are able to do for its residents. Thanks for the post. Tracy


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