Senate Health Education Labor and Pension Committee Proposal

Yesterday, Senators Kennedy and Dodd released a remarkable health care reform proposal that would end pre-existing condition exclusions, eliminate lifetime maximums, and require everyone to have insurance. Of course, we focused our review on those provisions that will impact chronic illness, and sent the following comments:

Senator Edward M. Kennedy
317 Russell Senate Building
Washington D.C. 20510
(202) 224-2417

Senator Christopher J. Dodd
448 Russell Building
Washington D.C., 20510
(202) 224-1083

Dear Senators Kennedy and Dodd:

Thank you for your truly impressive work drafting the HELP Committee’s health reform proposal and the Section by Section Narrative with Options. I am writing to provide you with some feedback from our unique perspective.

Advocacy for Patients with Chronic Illness, Inc. is a 501(c)(3) tax exempt organization that provides free information, advice, and advocacy services to patients with chronic illnesses nationwide, in areas including health and disability insurance, Social Security disability, employment and school-based accommodations, family and medical leave, and resource location. As such, we have had the opportunity to develop a well informed understanding of what it is like to live with chronic illness. We write to you today using our considerable experience with chronic illness to inform our viewpoint.

First, we applaud you for undertaking a daunting role with optimism and compassion. The thought that we might soon live in a country in which we no longer are barred from purchasing insurance because of a pre-existing condition, in which there are no lifetime or annual limits, in which we can afford good coverage, and in which everybody shares the cost of chronic illness by mandating that everyone be insured, is nothing short of thrilling.

However, because we are so intimately involved with the chronically ill, we see potential pitfalls and missed opportunities where others without our experience may not. We will comment on two areas: chronic disease management and Medicare for all as a public option.

I. Involving Patients In Managing Their Own Care

We fully support the creation of medical homes, and the involvement of interdisciplinary “health teams” that will provide and coordinate care for the chronically ill. However, there are two aspects in which we would expand the chronic care management model in ways that would be cost-saving.

First, the least expensive, most often squandered resource in our health care system is the patient herself. We know that patients who participate in their own care will be more compliant with doctor’s orders and, thus, achieve better health outcomes, thereby saving money. So our first suggestion is that you make the patient a member of the care management “team.” This would go beyond the patient decision aids discussed in section 217. The patient should be present for discussions among medical professionals about her care and care management and have a meaningful role in managing her care, as, of course, is necessary at least in between visits with medical providers. The patient should help weigh options and make decisions as a full partner, as suggested in section 217 and beyond. The patient also should be taught to be responsible for navigating the system by ensuring that prescription refills are obtained in a timely manner and that annual screenings be performed on time, and by providing reminders to the “team” when conferences are required.

By including the patient as a member of the treatment “team,” the patient will gain respect from medical professionals, who will begin to see patients as partners rather than subjects. By insuring that the patient participates in treatment decisions, the patient will understand her treatment plan and will be more likely to comply with it. And with the patient performing some of the non-medical aspects of care management without it costing the system a dime, we will save money. Failing to employ patients as a resource is a missed opportunity, at best.

Second – although not entirely separately – chronic illness extends beyond the limits of the medical office to school, work, and home. Patients will need assistance not only in learning to manage their own care, but also to learn to navigate all aspects of the system that affects their health care. They need to know what the Family & Medical Leave Act provides, what the Americans with Disabilities Act does for them, what schools are required to provide to children with chronic illnesses and other health problems, and they need to learn how to communicate with employers, schools, and others about these issues.

For example, Sarah has Celiac’s disease, which means she must avoid anything with gluten in it. Her mother had to rely on her doctor to advocate for her needs – until she found Advocacy for Patients, and we now have taught Sarah’s mother how to advocate for Sarah on her own. Last week, the school produced a draft plan of accommodation for the next school year that was insufficient in the most important respect, i.e., ensuring that all desks and hands are washed after eating or working with clay or other material that contains gluten in order to avoid cross-contamination. Sarah’s mom sent me a copy of the plan, and I instinctively drafted a response for the mother to send to the school. By the time she got my draft, she already had spoken to the school and obtained the necessary concession. In a half-dozen telephone conferences over the course of a year or so, we have taught Sarah’s mother to be Sarah’s advocate – and we have done this at a very minimal cost.

If we are to be serious about controlling chronic illness and its costs, workplace and school issues have to be part of our focus. In Sarah’s case, for example, if the school lunch were not gluten-free, or if she were cross-contaminated by another child, Sarah’s illness could spiral out of control, costing the health care system in the process. Ignoring these issues would be a mistake.

Similarly, failing to provide for navigators who can train patients to become “team” members and advocates will lead to adverse outcomes. In the current system, doctors are forced to spend valuable time advocating – something they are neither paid nor trained to do. Surely, it costs less to give a group of patients training in the Americans with Disabilities Act, or to provide a copy of our Know Your Rights Handbook (or something like it) that costs less than $10 to print, than it does to pay for care that is out of control because these issues were ignored.

In sum, we must manage chronic illness in all its manifestations, and to do so, we need not only navigators to assist patients to navigate the Gateways, but also navigators to help patients navigate the system as a whole.

II. Medicare For All Disproportionately Burdens the Chronically Ill

We understand that the Committee still is considering various public options. Option A, according to the Section by Section Narrative, is Medicare for all. We ask that you consider the consequences of such an option for the chronically ill.

We recently worked with a patient named Karen who is on Social Security disability and just became eligible for Medicare. Karen has Crohn’s disease, gastroparesis, and very aggressive multiple sclerosis. She cannot afford to pay twenty percent co-insurance every time she is hospitalized; if she had to do so, she would be bankrupt within a year. Karen lives in Indiana. Because she does see non-participating providers because of the complexity of her condition, she had to find a Medigap Plan F or J. There was no Plan J available, though, to a recipient under age 55 (at which point there are AARP plans only), and only one Plan F, in which Karen enrolled.

When it came to choosing a Part D drug plan, I input all of Karen’s medications into the Plan finder on the Medicare website, and came up with a plan that will cover 84 percent of her medications – the best we could do. But because of the Part D co-insurance, even before she reaches the doughnut hole, her monthly prescription for Rebif, which she takes for her multiple sclerosis, will cost her $600 every month. And that is only one of her fourteen prescription drugs. With the doughnut hole, Karen’s prescription drugs will cost her well over $10,000 per year. But she lives on disability and cannot afford this, although her disability income and her husband’s salary together put her over income for low-income assistance. Even with a Medigap plan, Karen may well go bankrupt due to Medicare Part D’s cost sharing.

Karen’s circumstance illustrates the problem with a public option modeled on Medicare. Co-insurance rather than co-pays can bankrupt the chronically ill, and the Medicare drug plan - which is far less generous than the prescription drug plan that applies to federal employees and members of Congress – is an impossibility for us. Indeed, under a Medicare for all approach, I, myself, would deplete my retirement savings long before I reach retirement age due to Parts B and D co-insurance.

If Medicare for all is to serve as the public option, there must be two adjuncts.

First, there must be guaranteed issue, affordable Medigap-type supplemental insurance for the chronically ill of any age, regardless of pre-existing conditions, and regardless of whether they are on Social Security disability, available in every State. This would ensure that the chronically ill would have a way to insulate themselves from crippling co-insurance.

Second, the public option prescription drug coverage must not be modeled on Medicare Part D, which has proven to be disastrous for people with high medication expenses. Although one option would be to expand the low-income assistance provided to Medicare recipients now, in our view, to serve the Committee’s stated goals of (1) ensuring that all Americans have insurance that is like that afforded to federal employees, and (2) ensuring that care is affordable, a co-pay for prescription drugs rather than co-insurance, and the elimination of a doughnut hole, are critical elements of a public option.

The Committee clearly recognizes that patient access to care and compliance with medication regimens are critical to controlling chronic illnesses. This is evident in section 213, on medication therapy management for chronic illness. Ensuring affordable access medical care in general, and prescription drugs specifically, is essential to achieving these goals.

III. Conclusion

We fully recognize the complexity of the task before you. The foregoing comments are intended to assist you to achieve the crucial goal of ensuring that every American – including the chronically ill – have affordable, accessible, portable, and universal health care. Of course, if we can be of further assistance, please do not hesitate to contact me.

Thank you.

Sincerely,

Jennifer C. Jaff