Friday, May 15, 2009

Heatlh Care Reform that Works

This week, the Senate Finance Committee issued its proposals for reforming our health care system, and invited comments. I read the entire 63 page document looking for a section on chronic disease management. I finally found it -- sort of. If you call smoking cessation and teaching people to take an aspirin a day chronic disease management. Since I don't, I submitted the following comments:

The Honorable Max Baucus
Chair, Senate Finance Committee
219 Dirksen Senate Office Building
Washington, DC 20510
Fax: (202) 224-9412

The Honorable Charles Grassley
Ranking Member, Senate Finance Committee
135 Hart Senate Office Building
Washington, DC 20510
Fax: (202) 224-6020

Dear Chairman Baucus and Senator Grassley:

Thank you for this opportunity to comment on your recent paper, “Transforming the Health Care Delivery System: Proposals to Improve Patient Care and Reduce Health Care Costs.”

Advocacy for Patients with Chronic Illness, Inc. provides free information, advice, and advocacy services to patients with chronic illnesses nationwide in areas including health and disability insurance, Social Security disability, employment discrimination, family and medical leave, educational equity, and resource location. Having provided assistance to thousands of chronically ill patients, we have a unique perspective on the needs of the chronically ill and the obstacles they must surmount in attempting to meet those needs. It is from this perspective that we reviewed the Committee’s proposals.

We very much appreciate the care and thought that went into the formulation of your proposals. Eliminating pre-existing condition exclusions and lifetime maximums is a huge step forward for the chronically ill. We also support a personal responsibility requirement that will enable Americans to share the costs of treating the chronically ill, just as we share the cost of Medicare and Social Security. We do, however, have some thoughts on ways that we feel your proposals could be improved as applied to the chronically ill.

First, you note that cost sharing reduces utilization, so that seniors with Medicare supplemental insurance are more likely to get annual mammograms, for example, than those without Medigap coverage. Thus, we are concerned about your emphasis on Medicare as a model because it does require 20 percent coinsurance, which is impossible to afford for many individuals. The burden of coinsurance is greater on the chronically ill because of their heightened utilization of the health care system.

In addition, currently, there are states in which it is nearly impossible for young people who are disabled to purchase Medigap policies at all, even if they can afford one. This should be eradicated; Medigap plans should be available on a guaranteed issue basis without pre-existing condition exclusions for everyone, regardless of age.

We also have serious misgivings about using Medicare Part D as a model for a prescription drug benefit. Medicare Part D has spawned some very burdensome unintended results, both in the Medicare system and in the context of commercial insurance, which often follows Medicare. For example, Medicare Part D is limited statutorily for paying only for FDA-approved uses. This makes sense, of course, for medications that are not tried and tested. However, there are medications that have been used off-label for more than 25 years – for example, 6-mercaptopurine is FDA approved as a chemotherapy drug, but it has been used to treat Crohn’s disease for more than 25 years – and because of this limitation in Medicare Part D, insurers that routinely paid for this medication in the past have now begun to deny coverage. To the extent that Medicare – and Part D in particular – has provided insurers with reasons to deny coverage of medically necessary, proven therapies, it should not be the model.

This point leads to perhaps the largest gap in the Finance Committee proposals, and that is the role of utilization review and management. Patients are afraid that we will not get the care we need under any public option. We are concerned that cost cutting means cutting treatment. It is not the case that patients want more care than they need; indeed, most patients with chronic illness would be very pleased to take fewer medications, see doctors less often, and undergo fewer tests and treatments. However, our experience is that we have to fight for the care that we need. Advocacy for Patients writes approximately 500 insurance appeals per year, and we have a roughly an 85 percent rate of success. If insurers were denying coverage only where appropriate, we should not be winning so many of our appeals.

This is probably the most vexing problem facing the chronically ill in the context of insurance, and this entire area is not addressed in most discussions of health care reform, including the Committee’s proposals. We hear “comparative effectiveness research,” and it translates into our experience of having to fight for what our doctors say we need. We hear “cost control,” and to us, it means that we will have to fight even harder than we already do now.

We know that treatment of chronic conditions saves money by ensuring that our conditions do not rage out of control, requiring more expensive hospitalizations, surgeries, and other treatments. Controlling cost cannot mean depriving us of the care we need to keep our illnesses in check. Yet, it is difficult for us to see how else the cost of chronic illness will be minimized not only by the Committee’s proposals, but by most of the proposals that are circulating.

The Committee rightly emphasizes prevention and wellness. On a prospective basis, preventing chronic illness is the most efficient and effective means of curbing cost. However, smoking cessation or taking aspirin will not cure my Crohn’s disease or my friend’s lupus or my colleague’s multiple sclerosis.

In our view, the only way to effectively control the cost of chronic illness is to involve patients in their own care management. Patients are a wasted resource in our health care system. They can learn to manage their care with just a little guidance. Patients who manage their own care are more compliant with doctor’s orders and, thus, they achieve better health outcomes, thereby reducing cost. That is how to control the cost of chronic illness. A cost-effective system of patient education with minimal assistance from patient navigators would save millions of dollars every year. We know. We do it every day.

With that said, we very much appreciate what the Committee has done. You have tackled very difficult issues and taken creative, thoughtful approaches. Many of the advances contained in your proposal will improve the lives of the chronically ill. We know that no plan is perfect, and that solutions will have to be tested and evaluated over time. We simply ask that you ensure that patients have what they need – no more and no less.

Thank you.

Jennifer C. Jaff


  1. Brilliant commentary - thanks for representing our needs so well!

  2. with each post I read I am more and more grateful for having met you at the CCFA event last week. This was an amazing letter.

  3. Keep the Both for this Helpful Article!
    Health Advice