Thursday, December 10, 2009

action alert: ask your Senators to support neurology incentives

The Alliance for Headache Disorders Advocacy has sent out a critical call to action, asking all of us to email our Senators. The full email follows.

Dear AHDA advocates:

The AHDA is dedicated to improving the welfare of individuals suffering from headache disorders. Our near-term goals have focused on increasing NIH funding for headache disorders to lead to improved therapies. However, the health care reform bill currently being debated in Congress has forced us to take action in a slightly different direction to protect access to quality medical care for patients with headache disorders.

The Senate Health Care Reform Bill contains a particular provision to provide bonus Medicare payments to doctors from certain primary care specialties. This is a very good idea. It is intended to incentivize and encourage doctors to enter and stay in primary care practice.

Physicians who specialize in headache medicine provide primary or principal care for patients with headache disorders and more than 90% of them are neurologists. Unfortunately, neurologists have been unaccountably left out of eligibility for these bonuses. If the Health Reform Bill passes with the incentive program as it is written, it will significantly undermine the ability to recruit and retain doctors to the field of headache medicine. Headache doctors are already very scarce, and it will become that much harder to find one.

What can we do? Fortunately, Sen Klobuchar of Minnesota, along with Sen Collins of Maine and Senator Brown of Ohio, have offered a bipartisan amendment to the Senate Health Care Reform Bill that would add neurologists to the Medicare incentive program. We, at the AHDA, have added our voice of support for this amendment to those of other national groups with interests in patients with neurological diseases, including the American Academy of Neurology, the ALS Association, the Parkinson's Action Network, the Epilepsy Foundation, the Brain Injury Association of America, the Alzheimer's Foundation of America, and the National Multiple Sclerosis Society.

We are asking you to contact your two Senators right now through our website to urge them to co-sponsor the Klobuchar amendment. Doing this is as easy as just a few mouse clicks. Please do it as soon as possible. Also, please forward this email and ask everyone that you know that cares about someone with a neurological disorder to do so now too. The Klobuchar amendment will be voted upon by the Senate any day now.

To email your Senators, click HERE.

It's easy and should take you 10 minutes or less.

Thank you very much.

Best regards,

Bob Shapiro
Bill Young
Brad Klein
Teri Robert

If you are not already receiving the AHDA alerts directly in your inbox, please click here to sign up.

Be well,

Tuesday, December 8, 2009

fluctuat nec mergitur*

* "She tosses on the waves but does not sink".

I remember when I spent a semester living in Paris during college, I frequently took comfort in this phrase, the motto of the city of Paris. I had a lot of trouble there with culture shock and the language barrier, even though I spoke quite a bit of French when I went. Now that I'm struggling, again, in troubled waters - this time because of chronic illness - I find myself coming back to this phrase.

November proved to be one of the hardest months of the year. The first three weeks I felt tossed around by the weather coming through, wave after wave of storms. We set all sorts of records for rainfall, and not surprisingly, the November storms brought huge wind and dramatic pressure changes. A perfect storm for Migraine misery. I spent three weeks doing nothing but my part-time job (a paltry 18 hours a week) and laying on the couch, and remembered how awful it is to be so sick.

The third week of storms, I decided to increase the dosage of acetazolamide, as Dr E had advised I could do. I lasted four days at that dose. It's hard to tell, but I want to say it made my head pain worse. I say it's hard to tell because I was already feeling so bad that it was difficult to tell what pain came from which trigger.

And when things began to look up, when the storms calmed and I stopped the higher dose of acetazolamide, when my mom came into town for Thanksgiving, I was tossed by yet another wave. My boss called me the Sunday night before Thanksgiving to let me know he was laying me off, because he just couldn't afford to keep paying me anymore. And to add insult to injury, the unemployment office is "reviewing my claim" and hasn't paid me in over a month.

The past few years have been an exercise in treading water and just trying not to drown in the stormy waves of chronic illness, constant pain, debilitating Migraine symptoms, adverse effects, depression, anxiety, unemployment, financial strain, frustration, stress. While my pain levels have undoubtedly improved over the past year, my emotional state has gotten worse.

I'm ready for this bad cycle to end. I'm ready for some good news. I'm ready for some smooth sailing. But I clearly don't get a choice in the matter. Chronic illness (and unemployment) is all too good at reminding us how little in life we can actually control; I'm left trying to weather this storm, trusting that I won't sink.

Be well,

Image courtesy of Wikipedia.