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Posts Tagged ‘Alliance for Headache Disorders Advocacy’

Support the Future of Headache Medicine in the U.S.

December 9th, 2009

The AHDA (Alliance for Headache Disorders Advocacy) makes us aware of an opportunity to make a difference in the future of headache medicine. Please take action today to support the the Klobuchar / Collins Amendment to the Senate Health Care Reform Bill. Apparently the bill sets up bonus Medicare payments to doctors from certain primary care specialties. This will give an incentive and encourage doctors to enter and stay in primary care practice.

The AHDA tells us:

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.

Senators Klobuchar of Minnesota, Collins of Maine and Brown of Ohio, created a bipartisan amendment to the bill that would add neurologists to the Medicare incentive program. The AHDA is backing the amendment along with other groups that support sufferers from 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.

In five minutes or less, you can add your voice to support for the Klobuchar / Collins Amendment and help encourage doctors to go into and stay in headache medicine. Just go to the AHDA’s special dedicated page: Email Your Senators to Support the Klobuchar/Collins Amendment. They’ve designed it to be really easy - please just take a few minutes and do it now! That is all.

- Megan

Tags: Alliance for Headache Disorders Advocacy, headache disorders, headache specialists, health care reform
Posted in Advocacy, Current Affairs, Medicine | Comments (0)

We Can Do Something About Pain Care Today

April 20th, 2009

Once again, there is an opportunity to take a little bitty action that makes a big difference.  There has been a National Pain Care Policy Act before Congress since 2003.  This may be the year at last, as it passed the House in March and is now in the Senate.  Pain is the most common reason that Americans access the health care system, yet there has been no consistent national standard for dealing with pain care.  This has great implications for all of us with chronic pain conditions, Migraine included.  The Alliance for Headache Disorders Advocacy has taken on passage of the National Pain Care Policy act as one of its goals - it will make a significant difference in the treatment we receive.

So, the time has come to email your senators and ask them to co-sponsor the National Pain Care Act.  It’s ridiculously easy.  The good folks at the AHDA have once again set it up so all you have to do is click, type in your name and address, add a few words of your own if you wish, and you’re done.

Please go over to the AHDA site and email your Senators today.  Less than five minutes, I promise, and you’ll be feeling no pain (at least, not from this).

- Megan Oltman

Tags: Alliance for Headache Disorders Advocacy, National Pain Care Policy Act, pain care
Posted in Advocacy, Current Affairs | Comments (1)

Please Email Congress Today - The Window is Closing

March 26th, 2009

There are two days left to get your email in to Congress (that is, today and tomorrow) requesting that they sign off on language that directs the National Institutes of Health to fully fund research on Migraine and Headache disorders.  You don’t even have to think up your own email, or find your Representative’s contact information (or know who your Representative is) - all you have to do is click here for the Alliance for Headache Disorders Advocacy’s action page.  There you can send your email in less than three minutes and a few clicks.  If you haven’t done it already, please do it now.  It will mean better treatment options for all of us.  It will mean more understanding of our disease, and more options in our future.  And if we don’t get enough signatures now, it will mean another year of delay, without basic research being done.  Please take a few minutes out to help.  I took three days out to go to D.C. on this effort.  You can take three minutes without leaving your chair.  Thanks!

- Megan

Cats in the window image courtesy of Helene Jutras.

Tags: Alliance for Headache Disorders Advocacy, Congress, Migraine treatment, National Institutes of Health
Posted in Advocacy | Comments (2)

The Time is Now to Write your Congressman/woman for More Migraine Funding

March 2nd, 2009

If you read my post about Headache on the Hill last week (or even if you didn’t but you’re keeping current in the world of Migraine advocacy) you know that there is currently a letter on Members of the US House of Representatives desks, asking them to direct the National Institutes of Health (NIH) to spend a fair share of their budget on Migraine and headache disorders research.

You can make a difference, it’s easy, and the time is NOW.  Use this link to go to the Alliance for Headache Disorders Advocacy (AHDA) and take action.  There is a letter already prepared to go to your representative - you can add your own text to it, and when you fill in your address, the form will automatically determine who your representative is and direct it to the correct congressional office.  Easy as pie.  It will literally take you 2-3 minutes, and the more of us they hear form, the better chance we have of succeeding.  A sentence or two of your own experience as a Migraine sufferer will help them understand why this is so important!

Please take a couple of minutes to make a difference for all of us!

- Megan

Clock face image courtesy of Steve Burke.

Tags: Alliance for Headache Disorders Advocacy, Migraine research, National Institutes of Health
Posted in Advocacy | Comments (0)

Headache on the Hill

February 25th, 2009

I spent the day yesterday doing something I’ve never done before - lobbying Congress.  I’m not entirely sure I would ever have predicted that I would lobby Congress.  It was a great experience, and one that I’m sure will take me several posts to process and tell you about.  But I can at least get started.  The Alliance for Headache Disorders Advocacy (ADHA) is a wonderful group of doctors, advocates, writers and researchers who are fighting for better headache care for YOU.  I arrived in DC on Monday for a training session put on by the AHDA and learned some key things about the underfunding of Migraine and headache disorders research, and about how to lobby.

Nearly 40 of us spent Tuesday on Capitol Hill speaking to legislators and legislative aides.  I visited two senators and three congressmen from my state, along with another Migraine sufferer.  We were requesting that they add language to the 2010 appropriations bill which will direct the National Institutes of Health (NIH) to spend a larger share of their funds on Migraine and Headache Disorder research.

Here are some of the things I learned, straight from the AHDA fact sheet which we shared with the legislative aides:

Headache Disorders are the most prevalent neurological disorders.  This year:

• More than 25% of middle aged American women will have a Migraine attack.
• 25% of American families will have a member with a Migraine attack.
• 19% of all Iraq war veterans will have a Migraine attack.
• 12% of all Americans will have a Migraine attack.
• 4% of all Americans will have chronic daily headache.

US costs for headache disorders this year will be:

• greater than $31 billion in total economic losses.
• 9% of all lost labor productivity.
• greater than the costs due to epilepsy, asthma and ovarian cancer combined.

Migraine is extremely disabling, resulting in:

• attacks that can be as disabling as quadriplegia or active psychosis.
• more lost years of healthy life in the US than due to epilepsy, multiple sclerosis, and ovarian cancer combined.
• an increased risk of cardiovascular disease leading to at least 1500 additional deaths in the US annually.

What has the response of the NIH been so far?  The NIH is responsible for funding, with our taxpayer dollars, the basic research that makes medical innovation possible.  So far the NIH funding for research on headache disorders is less than $13 million annually which comes to less than 0.05% of the NIH budget. Research of NIH funding relative to disease burdens (the impact of a disease on society, including prevalence, economics, disability, and mortality, as discussed above), shows that a fair share of funds for headache disorders (compared to other diseases with similar disease burdens) should be at least $103 million annually.

We got a good reception, particularly from our senators’ aides.  There is more work to do, but I think we are making an impact.  You can make an impact too.  Go to the ADHA site and sign up for their action alerts.  On Monday, March 2 we will be asking you to email your congressional representatives, asking them to sign on to the language directing the NIH to do the right thing with regard to headache disorders.  If you sign up for AHDA action alerts today, taking action next week will be as easy as a couple of clicks.

- Megan

We can make a difference!

US Capitol image courtesy of Kim Baker.

Tags: AHDA, Alliance for Headache Disorders Advocacy, Chronic Daily Headache, disability, disease burden, headache disorders, migraine
Posted in Advocacy, Current Affairs, Medicine, Science, Uncategorized | Comments (9)

Help Us Get Better Treatment

February 7th, 2009

Most of the time we do what we can to manage our own Migraines and support others, but don’t feel like we can have much of an impact on the disease itself or our treatment options. Coming up on February 24th is the Alliance for Headache Disorders Advocacy’s (ADHA) Annual “Headache on the Hill” - a day of advocacy on Capitol Hill where we will be lobbying our Congressional representatives for a larger share of National Institutes of Health dollars for Migraine and Headache Disorders research. I’m very excited to tell you that I will be in Washington along with Teri Robert and a number of leading Migraine specialists and advocates to speak with my Congressman and Senators. Read some more about what Teri has to say about it here: We Need Your Help to Get Better Migraine Treatment.

So, here’s what happens in the meantime. The ADHA will need your help in writing to your representatives sometime soon, possibly before Headache on the Hill, to inform them about the issues and ask them to lend their support. Could you please go over to the ADHA site today and sign up for their mailing list?  This way you will know when it’s time to write your representatives. Why are Migraine and Headache Diseases so under-represented when it comes to our National Health dollars? Probably because we haven’t had the kind of organized advocacy that other diseases have had, but we can change that now!

I’ll let you know here when it’s time to write to your representatives, but please sign up with ADHA today so that you don’t have to rely on me! Thanks for your help!

- Megan

Tags: action alerts, Alliance for Headache Disorders Advocacy, Headache on the Hill, migraine advocacy, Migraine disease, Teri Robert
Posted in Advocacy, Medicine | Comments (0)

Please Email Your Senator Today!

April 4th, 2008

You Can make a Difference - Right Now!  We migraineurs spend too much of our time feeling helpless.  Part of taking back your life from this disease is to feel and be powerful wherever and whenever you can.  You can do a piece of that today.  If you are in the US, please email your senators right now!  We just got word this morning that today is the deadline to get senators on board to support increases in NIH funding for headache disorder and Migraine disease research.  Last month’s efforts to get support in the House of Representatives were successful, so thanks to everyone who helped!  And now we get another chance!

Here’s the text of the email I received from ADHA this morning.  You can click on the link below to email your senators in less than 5 minutes.  Thanks in advance for your support.  Together we can make a difference!

Dear Ms.
Oltman:

Our efforts last month to urge members of
the US House of Representatives to support increases in NIH funding for research
on headache disorders were highly successful. Twelve Representatives signed the
Obey/Walsh letter. This is an outstanding result for the first mobilization of
our numbers, and we are optimistic that it will be enough to have our message
appended to the House appropriations bill.

It is now time to contact your US Senators
for the same purpose. Unfortunately our window of opportunity is only narrowly
open. The letter with Senators’ signatures must be submitted by today, April
4th.

1. Please take just 5 minutes RIGHT NOW to go
   directly to http://capwiz.com/headacheadvocacy/issues/alert/?alertid=11231066&PROCESS=Take+Action
   and send your message to your two US Senators
2. Please forward this email right away to
   anyone else concerned about the inadequate state of care for patients with
   headache disorders.

Only with increased research will new
effective treatments for headache disorders become available. And only with your
help will such research activities increase to levels appropriate to the huge
scale of this problem. The larger our voice, the greater will be our
impact.

Thanks again for your efforts.

Robert Shapiro, MD, PhD
William Young,
MD,
Teri Robert, PhD
Brad Klein, MD, MBA

And thanks from me too! - Megan

Tags: Alliance for Headache Disorders Advocacy
Posted in Current Affairs | Comments (0)

Please support help for our heads!

March 13th, 2008

Here is the text of a letter sent Tuesday of this week to all of us on the AHDA (Alliance for Headache Disorders Advocacy) mailing list.  The time is now to contact your congressperson and urge him/her to support more research funding for headache disorders.  The ADHA link below makes it very easy to do.  Please help NOW.

Dear AHDA advocates -

Well, the key moment has arrived for you to contact your Member of the US House of Representatives to take action for increasing NIH research for headache disorders.

A Dear Colleague letter was sent yesterday by Representatives Peter Welch and James Moran to all House offices, urging all Members of the House to co-sign a letter to Representatives David Obey and James Walsh. The Obey/Walsh letter requests inclusion of language that supports headache research to be appended to the FY09 appropriations bill for NIH. (For details, see the letter and attachments at the AHDA site.)

The more Representatives that co-sign the Obey/Walsh letter, the greater are the chances that the language will be included. The Obey/Walsh letter must be submitted with signatures by 3/19. This unfortunate deadline was a late-breaking surprise for us, so we have little more than a week to get as many signatures as possible. Please go to the AHDA website as soon as possible to contact your Representative and urge her/him to co-sign the Obey/Walsh letter now.

http://www.allianceforheadacheadvocacy.org/

Blessings upon your heads!
- Megan Oltman

Tags: Alliance for Headache Disorders Advocacy
Posted in Current Affairs, Medicine, Science | Comments (2)