11/02/2008 05:12 am ET Updated Nov 17, 2011

Health Reform When your Life Depends on it: Seven Essential Principles from the Multiple Sclerosis Society

Multiple sclerosis is a challenging illness that raises difficult issues in every area from basic stem cell research to insurance reforms, to disability policy, to clinical research and care. Not surprisingly, then, the MS community is anxiously watching the health reform debate.

A friend recently sent me the National Multiple Sclerosis Society's National Health Care Reform Principles. If you haven't seen their report, you should. NMSS enunciates seven basic principles that provide a great starting point to evaluate the two candidate's competing plans. I've culled bits and pieces from this short document. It reflects the unique perspective of people whose lives, health, and financial solvency are deeply affected by what will happen on November 4.

Let's start with Principle #1. Accessible health care coverage:

Access to appropriate public or private health coverage should be assured regardless of health or disability, employment status, age, claims history or risk. • Coverage should be guaranteed renewable and portable. Waiting periods, pre-existing condition exclusion periods and other measures designed to prevent consumers from participating in insurance should be eliminated... (Achieving full population coverage would reduce the need for these.) [That's their comment in the parenthesis.]

That's a pretty good description of the insurance market operated in accordance with the Obama plan. It is the precise opposite of what Senator McCain proposes. The McCain plan allows and encourages medical underwriting by loosening state regulations that now protection people with chronic illnesses.

More important, by taxing employer-based health coverage, the McCain plan seeks to shift millions of Americans into the nongroup health insurance market where medical underwriting is standard practice. Surveys indicate that two-thirds MS patients are privately insured, typically through their own or their spouse's employer.

The situation isn't great. Controlling for age, income, and other factors, privately-insured patients are more likely than people with public insurance to report difficulties paying for health care, to skimp on medications, and to spend less on food, heat, and other necessities to pay their medical bills. Still, people are substantially protected against being charged the full "actuarially fair" premium associated with MS care. The McCain plan places that arrangement at-risk. It would give a single adult a $2500 insurance tax credit. In 2004, the average annual medical expense of MS care was almost $13,000.

Shamed by Elizabeth Edwards, who noted that neither she nor Senator McCain would be covered by his health plan, Senator McCain says that he would "work with the states" to support Guaranteed Access Plans. Teh campaign provides no details, and the $7-10 billion it proposes to allocate wouldn't come close to meeting the need. Given the poor track record of state high-risk-pools created for the same purpose, people with chronic illnesses are justifiably wary.

Here is Principle #2: Affordable health care services and coverage:

People with chronic illness or disability are especially likely to be underinsured. That includes people with high deductible health plans, Medicare beneficiaries who cannot afford the Part D "donut hole" or a supplemental policy, and those who must pay 25% or more in co-insurance for essential drugs.... Insurance premiums become more affordable when based on the broad dissemination of risk through community rating and re-insurance methods, and sliding scales to help those at lower incomes.

The Obama plan includes community rating, reinsurance, and heavy support for low-income consumers. The McCain plan assigns high-deductible health plans a central place. As I have written before, such plans are highly inappropriate for low-income consumers. These plans are widely feared among people with chronic illnesses.

Principle #3: Standards for coverage of specific treatments should reflect reasonable prospects for improvement and/or prevention of deterioration.

Well-designed studies produce the scientific evidence necessary to continuously improve our understanding and promotion of quality MS care. Yet, when health plans condition coverage or reimbursement on overly strict standards of evidence, people with chronic and degenerative conditions are denied access to needed care.

This is a complicated subject, because payers sometimes have to say "no." Whom would you trust to make these tough calls: a state regulator-shopping insurer, or one overseen by the national insurance exchange of the Obama plan which also provides the backup option of joining a public plan.

Principle #4: Elimination of disparities in care

This one answers itself.

Principle #5: Comprehensive, quality health care available to all

Health care services for individuals with chronic illnesses should include access to the full spectrum of health care needed throughout the person's life. Any coverage plan should include a set of comprehensive benefits to address the most common areas affecting people with chronic conditions, including but not limited to: medical care, prescription drugs, dental care, rehabilitation services, preventive care, hospital in-patient care, mental health, durable medical equipment and hospice care.

This comprehensive vision is the antithesis of the current offerings on the nongroup market, let alone what is offered through high-deductible plans. Nongroup plans are much less likely to cover preventive, dental, mental health services. They impose high deductibles and copayments on most other items on that list. Many studies indicate that people are less likely to use preventive services under such plans. The McCain plan, by facilitating sale of policies across state lines, would weaken state regulations that require coverage of cancer screening, mental health services. and a host of other important forms of care. The Obama plan, in contrast, would anchor health insurance based on what is currently offered to federal employees.

Principle #6: Increased value of health care

The value of health care should be increased through the universal use of interoperable electronic medical records and increased emphasis on prevention.

I'm not expert here. I will simply note that Senator Obama proposes up-front investments in medical IT and other efforts to achieve this vision. He also proposes investments in public health infrastructure to complement clinical preventive services.

Principle #7: Access to high-quality, long-term supports and services.

Any health care reform that does not address the need to improve the provision of long-term care in America creates a false dichotomy between health care and long-term care. People living with chronic, disabling conditions understand fully that access to quality long-term supports and services is integral to maintaining optimal health.

As I have noted, long-term care hasn't gotten the attention it deserves. Democrats have spent the last seven years fighting Bush administration efforts to cut Medicaid payments of critical interest to the disabled. HHS Secretary Michael Leavitt told a conference of healthcare executives: "Medicaid must not become an inheritance protection plan." Leavitt's pretty moderate. So I think this comment is especially telling. The party that rails against the "death tax" imposed on a tiny group of multi-millionaires is oddly sanguine about the fact that many of our friends, neighbors, and loved ones will contract multiple sclerosis, heart failure, dementia, or some other chronic diseases, and then risk losing a lifetime of savings over a few months of skilled nursing care.

You get the picture. In just about every particular, the Obama health plan provides a great advance over the current situation. People living with MS need serious help. Most are insured, have worked for decades, and are now treated shabbily by our health financing system. Others with equally serious diseases are treated similarly. Senator McCain's plan would not address their concerns. Instead, it would make a difficult situation even worse. If you, or someone you care about, might someday face a serious chronic illness--and that's pretty much all of us--you have four weeks to make a difference.

One more thing. If you live in the DC area or are simply jazzed about disability issues, you might want to attend a neat event hosted by Americans with Disabilities, Families, Friends and Advocates. It is called "breaking down barriers and creating equality and justice for all," and it benefits the Obama Victory Fund.

Some cool people will be there, including House Majority Leader Steny H. Hoyer, Congressman Edward J. Markey, and Congressman Keith Ellison. If you want to come, click on the URL. Make sure to note that I am the person who encouraged you to come.