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Archive for the ‘Advocacy’ Category

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)

Express Migraine to Congress

October 24th, 2009

Betsy Blondin, editor and creator of the spectacular book of art and writing by Migraineurs, Migraine Expressions, has created a new advocacy campaign. A friend suggested that people purchase a copy of Migraine Expressions for their U.S. Senator or Representative, to help raise awareness and understanding of our disease in Congress. Betsy loved the idea and launched the effort to “Express Migraine to Congress.” At least 7 books are on the way to Congress!

To participate, purchase a book for $18.95 here: Express Migraine to Congress, and let Betsy know on the PayPal form or via e-mail which Congress person to send it to. Betsy will keep track of the Congress members receiving books so we won’t duplicate efforts on Betsy’s blog here.  For each book purchased for Congress, Betsy will donate $1 to the Alliance for Headache Disorders Advocacy (AHDA) toward advocacy efforts.

If you can’t afford to buy a book, you can use the links on Betsy’s Senate and House of Representatives pages to send a message to your Congress members, asking them to help millions of Migraineurs by supporting Congressional hearings and increased funding for migraine research.

I’ll be going to the AHDA’s third Headache on the Hill day of advocacy in February, and these books sent to Congress beforehand will help raise awareness of what we are lobbying about. Momentum is building for Congressional action. Our lobbying efforts have resulted in legislative report language supporting increased attention by the NIH for migraine research. Cindy McCain coming forward as a Migraineur and pledging to advocate for Congressional hearings, has to increase our visibility.

Let’s support Betsy in this great idea to raise awareness!

- Megan Oltman

Tags: AHDA, Congress, Headache on the Hill, migraine advocacy
Posted in Advocacy, Books | Comments (0)

Socialize my Medicine, Please!

September 23rd, 2009

I went to a business lunch & learn presentation today, given by a very nice insurance agent, all about health insurance. He covered the history of health insurance, how we got in the mess we’re in today, and some ideas about how to fix it. His intention was to give business owners an idea of some options and choices that exist now. Well, we didn’t really get far into that last part, as so much of the time was taken up with people’s impassioned views on the subject of our health care system. Not surprising in the USA today.

A lot of views were expressed about how people overuse medical care, and doctors over-test and over-prescribe in order to cover their butts against potential liability, how we expect higher standards of care than in the past, how we take too many prescription drugs and don’t emphasize prevention enough. I can get with most of that, as far as it goes. I think health education and healthy lifestyle choices could be much more emphasized. I think the practice of defensive medicine is a real problem. But I don’t think the answer is to turn back the clock and say if you injure your knee you should just live with the limitations for the rest of your life, rather than having rehabilitation available. I don’t think having real effective treatments for conditions that were taken for granted throughout human history is a bad thing. People don’t have to suffer like they did - throughout human history.

It was more than I could do in the short time we were together to really make the case for chronic illness, though I tried. We all need to be responsible for ourselves, and take care of ourselves, and looking to a doctor or a pill to solve everything is not the answer. But many of us do not have the option to go without medical care - we cannot function without it. And the advances in medicine that may be seen as excessive or unnecessary by some are not happening fast enough for us, to help us function.

Many of us with chronic illnesses are living the healthiest lifestyles imaginable. We’ve cut out the unhealthy things that others just think they should cut out. We don’t have a choice because these things make us sick now. One guy said he thought it was crazy that healthy people and sick people should pay the same insurance premiums. This shows the problem with a traditional, for profit insurance risk model - but how can any rational person say that you have to be extremely wealthy to be a sick person? Should I pay twice (or five times) as much for my insurance as you? In other words if I get sick, if I have a genetic predisposition to disease, have an accident, or am just unlucky, I should go broke and end up an the street in order to pay for my care? Or maybe I should just die? A pure for-profit insurance model like this guy was championing, that’s the real death panel.  (Choosing who should live or die based on ability to pay. We have that in this country right now!)

I’m responding to things that I couldn’t respond to at the time without completely diverting the conversation. Unlike some wingnuts in town hall meetings around this country, I’m polite enough not to shout people down. Most of the time.

But what really got me was when we started talking about the Canadian model - interestingly, our presenter was a Canadian, living in the US for the last 15 years. He debunked the myth that people wait years for needed surgery in Canada. The same guy whose views I took issue with above said that in Canada the health care is free but the beer is really expensive. He said, “I’d rather have a cheap six-pack than a heart transplant.” Now listen, he was trying to be funny, but come on. Ask anyone on the street if they’d rather have a beer or a heart transplant, and chances are only those who need heart transplants are going to opt for the second choice. Even if you don’t like beer… The point is, that if you need a heart transplant, you should be able to have one without worrying about losing your life savings, or dying without the care you need. And yeah, go on and tax the unhealthy things to pay for the healthcare. Makes sense to me!

- Megan

Hit in the head image courtesy of Pawel Loj.

Tags: chronic illness, health care reform, health insurance
Posted in Advocacy, Current Affairs, Rant | Comments (4)

Don’t restrict Acetominophen - Educate, don’t Regulate

September 22nd, 2009

Please sign the American Pain Foundation’s petition to the Food & Drug Administration asking them to educate the public about the dangers of overuse of acetominophen (Tylenol), rather than restricting its use.  The FDA is considering banning pain medications such as Lortab, Percocet and Darvocet which contain acetominophen as a second ingredient in combination with a narcotic pain reliever, as well as making extra-strength acetominophen formulations available only by prescription.  As the petition states,

When used as recommended, acetaminophen is a safe and effective pain reliever and fever reducer and has been used by millions of Americans for decades.  This medicine, like all medicines, has risks when used beyond the recommended amounts.

Acetaminophen: Educate, Do Not Regulate.

The FDA’s proposed regulations are due to concerns about liver damage from overuse of acetominophen.  Proper labeling could do away with much of this concern, and avoid leaving pain patients without medications they need to get by on a daily basis. Without proper labeling, it’s easy to overuse the medication even at lower doses. More importantly, people who rely on these medications to get through their daily lives will be left without help.

You can also leave comments directly for the FDA - the comment period ends September 30th.

Please take a few minutes to take action on this important issue!

- Megan

Tags: acetominophen, American Pain Foundation, FDA, pain
Posted in Advocacy, Managing, Medicine | Comments (0)

Cindy McCain - A High Profile Migraine Advocate

September 16th, 2009

You may know that Cindy McCain came out of the closet as a Migraineur in the past few weeks, revealing her long struggle with the disease, and very controversially likening her suffering to that of a prisoner of war.  Whatever you may make of that statement, there is no doubt that this will bring a lot of attention to Migraine disease.  A high profile advocate may be just what we need to finally get some recognition for the huge impact of this disease. Cindy McCain gave the keynote address at the International Headache Congress in Philadelphia last week, and Teri Robert got an exclusive interview with her.  You can read Teri’s inspiring article here: Interview with Cindy McCain.

- Megan

Tags: migraine advocacy, Migraine and Headache awareness
Posted in Advocacy, Current Affairs | Comments (0)

Juggling Work & Illness

June 10th, 2009

Some of you may know that for the past few months I have been writing articles on Health Central’s My Migraine Connection on legal issues that relate to Migraine and chronic illness - doctor/patient confidentiality, protection of your Medical Records under HIPAA, Accommodations under the Americans with Disabilities Act, and look soon (in the next day or two) for an article on taking intermittent leave under the Family Medical Leave Act. You may know that in addition to coaching Migraineurs and others with chronic illness in how to manage life, get better, and live well with chronic illness, I am also a business coach, an attorney and a mediator, and I’m helping my husband develop several other web-based businesses for our family.

I try not to make too many recommendations that I haven’t tried myself, and so if I am going to coach and advise people in how to perform the extreme juggling act that is life with chronic illness, I guess I’d better be quite the juggler myself. I didn’t necessarily set out to do it on purpose - it worked out that way. When full time lawyering didn’t fit with chronic fatigue and triggered too many Migraines, when business coaching dropped way off in the current economy, when Migraine management coaching was a great idea but needed some time to develop, I have tried to keep nimble and keep using all my skills, trying new things and renewing old ones, all while getting sufficient rest, managing my triggers, and practicing my intentional relaxation.

I really started out this post to point you to the writing I’ve done on legal topics lately, because I think as you are managing your life with Migraine, these are useful pieces of information for you to have. But I do think a lot about all the many pieces that make up my life, the balls I have up in the air, as I work to manage it all, and to help those of you who work with me to manage what you juggle as well. It’s great to have something to work on. You don’t need to have as many things to manage as I do - I’m probably an extreme case. But it is important for us to have a sense of purpose and to be making a contribution in life - even when we are ill. It may not be work for pay - but if that’s possible, it’s a good thing! I recently added a little part-time job to my mix that keeps me on my feet for several hours, several days a week. Despite some initial exhaustion, over all my stamina seems to be building.

I hope for you that you have something that can get you out of bed and give you a sense of purpose - at least some of the time. Let me know how your juggling act is going!

- Megan

Street juggler image courtesy of Amit Bansal.

Tags: disability rights, managing life with migraine, work-life balance, working
Posted in Advocacy, Managing, Musings | Comments (2)

Headache Carnivals and Awareness

June 8th, 2009

It’s a big week in the world of headache - first of all it’s Migraine and Headache Blog Carnival time again, with this month’s topic of “What people don’t understand about migraines & about what it’s like to live with them” posted over at Somebody Heal Me. Lots of great posts, both on and off topic. If you haven’t checked out The Headache & Migraine Disease Blog Carnival before, it was been created to provide both headache patients and people who blog about headaches with opportunities to share ideas on topics of particular interest and importance to us.

But even bigger news is that it’s National Headache Awareness week, sponsored by the National Headache Foundation.  Educational events are going on throughout the country this week to raise awareness of Migraine and other headache disorders.  A great new tool on the National Headache Foundation web site is Headache U, an on-line resource where you can look up your experiences with headache, create a personal headache profile, and get matched with the right resources for you.

A great week for educating both ourselves and the other people in our lives about Migraine Disease and Headache Disorders!

- Megan

Tags: blog carnival, headache disorders, Migraine and Headache awareness, Migraine disease, National Headache Awareness Week
Posted in Advocacy, Communicating, Weblogs | Comments (1)

One Million Dollars for Moms for Migraine? That shouldn’t be Hard!

May 8th, 2009

The National Headache Foundation has a great idea.  There are at least 36 million Americans who suffer from Migraine disaease.  (Yes, look around.  That’s one out of every 12 people you know!) If just one million of us gave a dollar each, that would raise a Million dollars for Migraine research!  Did I mention that Migraine research is so underfunded that the research is about 30 years behind any other major disease that impacts this many people?  Yes, I did, but that’s okay, I’ll mention it again.  Please go back and read what we were lobbying for at Headache on the Hill.

Only one out of 36 of us has to participate to make this work.  Are you game?  Go on over to the National Headache Foundation and give just one dollar!

Teri Robert lets us know about a lovely added twist, just in time for Mother’s Day!  Have a mother or grandmother with Migraine Disease?  Are you married to one?  Is your sister one?  How about giving one dollar for Migraine research in her name - a lovely way to recognize her on Mother’s Day!  Read Teri’s post The Perfect Affordable Gift for Migraineurs here.  The National Headache Foundation is launching the Migraine Million Campaign just in time for Mother’s Day - to raise awareness that this is a genetically based disease.  Talk to your Mom about Migraine disease.

- Megan Oltman

P.S. Six percent of men have Migraine disease too. You can give a dollar in the honor of all those Mother’s sons!

Tags: Migraine disease, Migraine research, National Headache Foundation, Teri Robert
Posted in Advocacy, Current Affairs | Comments (0)

MAGNUM - 15 years of Fighting for Migraineurs Rights

April 22nd, 2009

Coming up this Sunday, April 26th, at 4 pm Eastern time, I will be hosting the second of our monthly Managing Life with Migraine Teleconferences with Michael John Coleman, Co-Founder, President, and Executive Director of MAGNUM, the National Migraine Association.  The association was founded in 1994, and has been instrumental in many pieces of legislation that have made a difference to the lives of Migraineurs.  In their own words:

MAGNUM: Migraine Awareness Group: A National Understanding for Migraineurs, was created to bring public awareness utilizing the electronic, print and artistic mediums, to the fact that Migraine is a true biologic neurological disease, to assist Migraine sufferers, their families, and coworkers, and to help improve the quality of life of Migraine sufferers worldwide.

Michael John Coleman is one of MAGNUM’s Co-Founders, an award-winning photographer (though we can’t show you photos on the teleconference), and has been involved in many significant battles for Migraineurs in the past 15 years.  We’d love to have you join us on the teleconference.  The call is free but you must register to be on the call.  Go to Managing Life with Migraine Teleconferences to register.  If you already registered for last month’s teleconference there’s no need to register again.

- Megan Oltman

Tags: MAGNUM, managing life with migraine, migraine advocacy
Posted in Advocacy, Managing | Comments (4)

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 (0)