Getting disease-modifying drugs in the U.S.

Many readers of J.K. Rowling's article will identify with her feelings of frustration and bitterness as she watched her mother's MS progress without treatments and therapies that might have helped. Her poignant statement that there is a better chance of being prescribed an MS-modifying drug in Turkey than in the United Kingdom points to a disturbing reality. In spite of the existence of MS drugs that reduce relapses, reduce brain lesion development, and slow progression of disability, there are many people with MS who have no access to them.

In the United States, approximately 50% of people with MS are taking one of the disease-modifying therapies. But in recent years, insurance coverage for prescription medications has steadily eroded. To control costs, health insurers have increased prescription drug premiums and co-pays, limited benefits, converted drug coverage to major medical, and limited or "tiered" their formularies, which are lists of covered medications.

If you are experiencing changes like these in your prescription coverage, and your disease-modifying therapy is being priced beyond your reach, it is important to challenge and appeal such decisions. Even if you are currently satisfied with your insurance coverage, we suggest the following steps:

1. Be educated about MS. Be an expert on the health needs MS generates, and the recommended standards of care. Keep abreast of clinical research that supports or substantiates your position.

2. Keep a health-care journal. Document the course of your MS and any changes as they occur. A journal may help establish that disease-modifying therapy has stabilized your disease, reduced relapses, or lessened hospitalizations, ER visits, or steroid use. Insurers respond to cost-benefit analyses.

3. Engage your physician. Create a partnership with your physician. Physicians are powerful advocates and can significantly influence a determination of health insurance coverage.

4. Know your health plan. The "Summary of Benefits" you received when you enrolled is not a legal document. Request the "Evidence of Coverage" from your plan. Know what is covered, what is not, and where "medical necessity" becomes the determining factor.

5. Involve your employer. Employers--not health insurance companies--make the decisions about coverage for their employees. Does your employer understand the impact of specific choices on you as an employee? Can you demonstrate that being on therapy makes you a more reliable and productive employee?

6. Know the competition. Choice of plans is often an element in both employee-sponsored and private insurance programs. Are there other plan options that offer you broader coverage? Are you eligible for coverage from a professional or trade association, a Chamber of Commerce, alumni organizations, or the Veterans Administration?

If you encounter prescription drug coverage problems:

1. Notify your Patient Assistance Program. Each of the disease modifying drugs has a support service for patients. Seek their expertise in exploring options for continuation of your therapy.

2. Know your rights. Has your state passed a Patient's Bill of Rights? Is your insurance plan subject to state regulation, or is it a self-funded "ERISA" plan that is regulated by the U.S. Department of Labor? Is there a state ombudsman who can assist with your appeal?

3. APPEAL! Know the procedures for appeal within your plan and pursue all available steps. If you are not satisfied within your plan, 41 states have an external review process you may use.

4. Inform the National MS Society. Your chapter wants to know about these problems. The Society is tracking them to develop broad advocacy strategies in response.

You are your strongest advocate. With the health-care system in crisis as it is today, advocacy on a case-by-case basis shows the promise of having the most success.

Dorothy Northrop is the director of Clinical Programs at the National MS Society's Professional Resource Center