by Cort Johnson
The results of the Presidential election leave the ME/CFS Community with a chance and some hope, but no guarantees of major change…
With President Obama in office, the National Institutes of Health (NIH) will remain as budget challenged as ever, and the chances of getting significantly more funding remain low at best, but as the country digs its way out of the worst recession since the depression there is some cause for hope. When President Obama sent Nancy Ann De Parle – a high-level aide with experience in health care matters – to confer with Department of Health and Human Services (DHHS) leaders, he became the first President to advocate for – or even acknowledge – Chronic Fatigue Syndrome. Remarkably, De Parle stated that President Obama had never sent her to advocate on behalf of a single disease before.
- Dig deeper: The Obama Promise is Fulfilled
The President’s promise (through De Parle) – to elevate ME/CFS’s priority at the NIH – was encouraging, but it will take work to ensure that an administration with many major issues on its plate is held to its promise. With the FDA Stakeholders Meeting, the CFS biobank, the ad hoc Working Group and a possible Definitions Workshop, there are signs of more upper-level interest in this disorder, but massive changes are needed too. President Obama’s embrace of the ME/CFS community’s situation doesn’t mean we’ll get them, but it does provides a starting place we can build on.
It might also be noted that, after successfully passing review, Dr. Reeves’ job at the CDC appeared secure when he was abruptly removed not long after the Obama administration began. Someone new on the scene, it appears, didn’t feel he was the man for the job.
The Romney/Ryan ticket would have come into office focused on deficit reduction – a worthy goal, but one with significant implications for federal spending. The Ryan budget’s proposed NIH cuts of 25% over two years, while probably not achievable, suggested that Ryan, who by all reports would have been given substantial influence in a Romney administration, holds little stock in federal medical research funding. The proposed cuts were so extreme as to give some members of his own party alarm.
Given its tenuous hold on funding, ME/CFS might have been one of the first programs not just to be cut, but to go. The federal advisory committee, CFSAC, would surely be gone as the DHHS struggled to purge every non-essential program.
While federal funding for ME/CFS is abysmal, the federal government still remains easily the biggest funder of ME/CFS research in the world. With the feds funding the Lights, Dr. Klimas, Dr. Broderick, Dr. Taylor and other researchers’ work, and with smaller research efforts like the CFIDS Association and Simmaron relying on turning pilot study data into NIH grants, adequate NIH funding levels are critical for significant progress to occur.
The President’s re-election means that the Affordable Health Care Act will be implemented by a friendly administration. President Romney may not have been able to repeal the bill, but a Romney administration would surely have done its best to blunt it administratively, perhaps hamstringing it enough to force its eventual repeal.
The Affordable Health Care Act provides significant health care benefits to people with chronic illnesses, including barring insurance companies from refusing to cover or charging higher premiums to people with pre-existing illnesses. Once you get ill, you can’t be dropped from coverage. Lower income individuals will be able to apply for Medicaid and many middle income families should see a break in their premium payments. Lifetime limits will end. Insurers will have to provide rebates if they spend less than 80-85% of premium dollars on medical care. All of these should be helpful for an often financially struggling ME/CFS community. (Find a timeline here.)
Now the question arises: how will the law be implemented? Thus far only 15 states have begun to build the framework for the state online insurance marketplaces the law envisioned. (Click here to check out your state). The states have until Nov 16th to tell the federal government if they’re going to create their own exchange and, if they are, they must submit their plans by Jan 1, 2013. The federal government will establish exchanges where the states are unwilling or unable to do so. Thus far Alabama, Wyoming and Montana have passed laws blocking the Act, but the federal will override those laws.
The federal government will provide at least two nationwide health insurance plans that will compete directly with private insurers. One of the plans must be offered by a non-profit entity.
Given the high priority debt reduction, it’s possible that some benefits, such as the federal subsidies to help families up to 400% of the poverty level ($14,856 for an individual or $30,656 for a family of four), will get scaled back. Providing Medicaid to people with incomes up to 133% of the poverty level is another benefit that might get cut back, and the Supreme Court’s decision not to require states to participate in the Medicaid expansion means that some states may simply not honor that provision.
Voters make choices based on many different factors, but it’s hard to argue that, at least with regards to Chronic Fatigue Syndrome, the ME/CFS community – with its need for more research funding and more affordable health care – is not better off with the Obama/Biden team at the helm.
Disclaimer: The views and opinions expressed in this article are those of the author, and do not necessarily represent the views of Phoenix Rising.