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California Bill Limiting ‘Step Therapy’ Clears First Policy Committee

29 Apr

Last June 2010, the National Fibromyalgia Association urged patients in California to write their legislative officials to support the passage of a bill which would limit the practice by insurance companies known as “step therapy” or “fail first,” where patients have to take up to five older, less expensive medicines before they gain access to the treatment initially prescribed by their doctor. (“Patients respond to National Fibromyalgia Association’s Call to Action urging end to unethical practice of “Step Therapy”)

The practice of step therapy denies patients access to critical medication for Californians suffering from fibromyalgia, neuropathy, multiple sclerosis, arthritis, cancer, and diabetes-related pain, among many other painful conditions.

On April 26, 2011, California Step Therapy (aka, “fail first”) Bill, AB 369, passed the Assembly Health Committee on an 11-5 vote despite heavy opposition from the health insurance lobby. The bill is now headed to the Assembly Appropriations Committee. There was bipartisan support for the bill in the Assembly Health Committee.

If the bill passes, it will be an important milestone for pain patients, not just in California, but in other states where similar types of policies are pending.

We would like to congratulate For Grace, the Bill’s major sponsor, for their hard work in making sure that the patients’ care are put “back in the hands of physicians who are in the best position of knowing the medical history and needs of pain patients.”

If you would like to support AB 369, send your letter to:

Assemblymember Jared Huffman
State Capitol, Room 4139
Sacramento, CA 95814
Fax: 916-319-2106
Email: debra.gravert@asm.ca.gov

Becky Halstead: Learning to Say No

14 Dec

By Ben Ryan

After a quarter century of “Sir, yes sir!” Becky Halstead had to learn to say “no.”  To do so was contrary to the very core of her personality.  Relentless discipline had defined her life since early childhood and had helped her shatter one glass ceiling after the next as she marched her way up to the one-star rank of Brigadier General in the United States Army.

“My rheumatologist said, ‘Ma’am, the things that made you do really well in the Army, that served you well, are now working against you,’” Halstead recalled.

Staying in tip-top physical shape was always paramount to her duties.  But beginning in 2004, the running she had enjoyed for nearly three decades began causing searing pain through her legs.

“It was as if you were blowing air into my legs and they were going to explode,” she said.

Typically a head-to-the-pillow sleeper who got by on four or five hours a night, she also began having trouble sleeping for the first time in her life.

She was diagnosed with fibromyalgia not long before her deployment to Iraq, where she was a Commanding General for logistics, leading 20,000 military officers who were responsible for providing supplies, transportation and other support services to a quarter million troops.  True to form, she toughed it through.  But at a great cost to herself.  On a scale of one to 10, she said her pain level in those days was a 10, every single day.

She kept running.

“My attitude was, if it’s not going to kill me, then I’m going to keep doing it,” she said  “It’s painful either way.”

After returning to the States, where she became the equivalent of the president of a university as the first female Chief of Ordnance and Commanding General of the Army’s Ordnance Center and Schools, she faced the growing reality that it was time to make a strategic move on her own behalf for once.

“I had an incredible military career,” she said.  “I was blessed to be promoted early at every rank.  I commanded at all levels.  Some people would tell you I was destined for another star if not multiple more stars.”

In 2008, she decided to retire.

“Yeah, I was pretty upset about having to leave,” she said.  “It was a disappointment.  But I just took that challenge and turned it into an opportunity and went, ‘Okay, well, I’m going to live to be 100.  I’m only 49, I’d better figure this out.’  My whole premise of life is you’ve got to lead yourself.  And so the first thing to do, I think, is to accept that you have this condition, but do not accept that it’s going to run your life.”

Today, 51 and living in rural Virginia, she directs her own consultant group, Steadfast Leadership.  She specializes in motivational speaking and leadership training, inspiring clients in the educational and corporate sectors as well as divisions of the military to achieve the kind of success she’s so long enjoyed.

Running her own business gives her the freedom to design her own schedule, take time to care for herself and reduce stress, and in her words, “to learn to say no.”

“Now, on a daily basis, two plus years out of the military with a lot of changes to my lifestyle, I would say the average day is more like a three,” she said of her current pain levels.  “And I probably don’t let it get above a seven or eight.”

Those changes include adjustments to her diet, the use of chiropractics and a more moderate regimen of exercise.   She’s always keeping a sharp eye out for new information that might help her, and keeps an equally vigilant eye on herself.

“The more educated you are, the more you see the signs and you don’t let yourself spiral out of control,” she said.  “When my legs start to get where I can’t sit still and I feel like my heart’s going to come out my legs, then I know that I have pushed myself too hard.  Sometimes it’s to the point where it takes me several days to get back down off of that.  But at least I recognize it, so I don’t get any deeper into a hole.”

The lessons she’s learned from her own health struggles have informed the insights she shares with others, including her role as an active spokesperson for the Foundation for Chiropractic Progress.

“In my dealing with fibromyalgia, I think it’s helped me help other people to deal with not just fibromyalgia, but any kind of pain in their life: emotional, physical, spiritual,” she said.  “It helped me be a more understanding, caring, encouraging person for other people.”

Update on FDA rejection of Sodium Oxybate for treatment of fibromyalgia

12 Oct

On October 11, 2010, the FDA voted not to approve Sodium Oxybate for the treatment of fibromyalgia. Despite this setback, the National Fibromyalgia Association is committed to continue advocating for access to treatments for the fibromyalgia community.  We want to thank everyone who responded to our call to action last week by sending letters to the FDA in support of the approval of this drug, which would have been only the 4th medication for fibromyalgia, had it been approved. As we receive further information on this issue, we will continue to keep you updated.

There is still much we can do as a patient community so that the FDA, the medical community, the media and the general public may have better understanding of the extensive needs for new and improved treatments for fibromyalgia. Thank you for your support!

 

Related Links
» NFA Responds to FDA Decision to Postpone Approval of Sodium Oxybate
» Transcript of NFA President at FDA Hearing

 

Attention Nevada Fibromyalgia patients: Protect your access to medications

21 Sep

A message to Nevada fibromyalgia patients, from Rae Marie Gleason, NFA Executive Director

On September 23, 2010 the Nevada Pharmacy and Therapeutics Committee will meet in Carson City to review all fibromyalgia (FM) FDA approved medications. They are contemplating making these medications available only after a person tries several other drugs that prove to be ineffective in the treatment of FM. This type of process is termed a “step program” and it can ultimately lead to denial of effective prescription drug treatment for people with FM.

The NFA is requesting that you click here to download the letter template, sign it and if you have a personal story relevant to FDA approved medications that you would like to include, please just jot down your thoughts on a separate piece of paper, place it in the envelope and immediately mail everything to the following address:

Nevada Department of Health Care Policy and Human Services
Division of Health Care Policy and Financing
100 E. William Street, Suite 102
Carson City, NFV 89701

Patient testimonies can make a difference regarding access to care issues and this is your chance to be heard. If you know other people with fibromyalgia who are willing to send the above information, please download the letter template, send it along with the address and ask them to support other Nevada FM patients by sending in their testimony.

Please let us know if you mail information to the Review Commission and if you send in a personal testimony, please send the NFA a copy for our records.

Thank you for helping other people in Nevada secure their right to FDA approved medications.

Tips for “going back to school with fibromyalgia”

13 Sep

It’s back to school for many of our students this month. The NFA has featured numerous articles on managing fibromyalgia symptoms while attending classes in our FM Online newsletter.

More recently, we also asked our Facebook friends for their tips on going back to school with fibromyalgia. A majority of the responses suggested taking online classes. In the past few years alone, online classes have continued to grow in popularity, not just for college and university levels, but even for grades K-12.

Here’s what our Facebook friends had to say:

Lindsey F. – I’m currently enrolled in college classes on line. There are no classes to show up to, I can do the material when I have the time and I can think. You only have to take what you can handle, maybe start at one or two classes. I highly recommend online courses for anyone who suffers from fibro. It’s amazing being able to obtain something I never thought possible.

Joy S. – Honestly, sucking it up and getting a handicap parking pass was one of the best things I did when in school. I hated to do it, but walking so much was killing me. I only use it on days I know I need it, which was every day when in school! Also, I had to learn to let things go at home a bit when I had so much pressure from school, or I’d just end up crashing.

Wendy P. – The symptoms started 6 years ago, just before my freshman year in college. Getting plenty of rest is crucial, especially since lack of it can make symptoms worse. Same thing goes for stress. I found that swimming at the university pool helped me manage stress and pain levels. There were definitely times though where I didn’t feel like crawling out of bed because of pain, but forced myself to anyways. I feel for the young sufferers of fibromyalgia.

Clare O. – Find a workable balance, and don’t be afraid challenge the fibro without overdoing it. Ask for help, don’t be angry – my biggest downfall!!!

Lisa D. – I am able to take online classes (2 classes a semester) and the professors work with me through the University Disability program. I’m given longer time periods to finish exams and homework when I need it, but I make sure to stay ahead and not take use these freebies unless I absolutely need too, so that when flare ups get me down I can rest.

Jennifer T. – I’m a high school librarian, which was always my dream but has become the best job in education I could have with this condition. My best friend has fibro AND chronic fatigue syndrome. We’ve made a point of being honest with our principal about the fibro and have made it clear that we make our own accommodations so that we can give our students our best. Sometimes that means teaching from a chair or a stool. And we’ve traded off things before. If I’m in better shape one day than she is, I’ve no problem covering her duty station or moving my “show” to her room instead of having her class come to me.  Everyday is a new experiment, but we figure it out and have a good support system at work.

If you have a tip for going back to school with fibromyalgia, post it here or email to: NFA@fmaware.org. We would especially like to hear from you if you are K-12.

More resources:

K-12
Online Charter Schools Proving Popular

“Getting through the Schoolday When You Have FM”

“FM in the classroom”

FibroBlog Monday: Some of our favorite blogs and posts

9 Aug

The fibromyalgia community is fortunate to have many talented writers who, despite everyday challenges of living with chronic pain and other debilitating symptoms of fibromyalgia, continue to raise awareness of this very real condition by sharing their personal and poignant stories on their blogs. The National Fibromyalgia Association launched our own FibroBlog early this year, and we are honored to join the ranks of those raising their “blog voices” for the millions of people with fibromyalgia.

We read and follow many fibromyalgia blogs, and every so often, we would also like to share some of them with you:

Chronic Connection
If my children have learnt anything positive about having a “Chronic Mom”, it is that they not only demonstrate compassion toward me when they can see that I’m struggling, but towards each other, and others in their lives.  They are such gentle souls, with an amazing grasp of awareness towards others, and I’m very proud of them both… Read more….

Fibromyalgia Blog
This is a list of 45 simple ways to improve your life.  Nothing drastic. Nothing requiring years of therapy or hard work. Just minor changes that have major effects. You can apply these tips now to immediately add more  joy, positivity, and zest to your life…Read more…

Oh My Aches & Pains
How to really help me when I ask for your help
Perhaps the most frustrating thing about being disabled is needing to ask for help. The second most frustrating thing is navigating the whole dynamic of being the person who is being helped. Low and behold, I have discovered that many strange things can happen when you ask your family, friends and strangers for help…Read more...

In the Shadows of Fibromyalgia
Things are going pretty well, considering you have fibromyalgia. Then out of the blue it suddenly hits – the dreaded flare. And you wonder, what could have caused this to happen? Read more

Graceful Agony
I am extremely honored, and VERY excited to announce that Graceful Agony has been nominated in THREE categories of The Canadian Weblog Awards for 2010!!  HOORAY!!! The Canadian Weblog Awards is a juried competition that showcases and recognizes excellence in Canadian Blogs, and the art of ‘blogging’.  There are several categories, and come January 1st, 2011 – 3 winners will be announced for each category!! Read more

Felicia Fibro
Sensitivities to Light
For people with fibromyalgia sensitivities to light, sound and touch can greatly alter their day to day lives. Bright lights, sounds that are numerous or loud and even light touch can trigger pain and cognitive difficulties quickly…Read more

Rebuilding Wellness
Is your ache all in your head?

While wogging this morning (walking a little/jogging a little), I had a thought. Exercise does that to me. It helps me do a bit of mental cave spelunking. Today, I thought about pain levels…Read more…

FibroHaven
Is it time to rethink the fibromyalgia doctor-patient relationship?
As a fibromyalgia patient, what are your expectations when you arrive for your doctor appointments? Do you arrive prepared to work with your doctor on how best to manage the troubling symptoms of fibromyalgia, or do you arrive hopeful that he/she will have some treatment, some answer that will once and for all end your suffering? Read more…

Patients respond to National Fibromyalgia Association’s Call to Action urging end to unethical practice of “Step Therapy”

19 Jul

Wendy Lewis, with daugther Jett

Last month, the National Fibromyalgia Association urged patients in California to write their legislative officials to support the passage of Assembly Bill 1826, which would limit the practice by insurance companies known as “step therapy” or “fail first,” where patients have to take up to five older, less expensive medicines before they gain access to the treatment initially prescribed by their doctor.  Proponents of AB 1826 argue that the practice of step therapy denies patients access to critical medication for Californians suffering from fibromyalgia, neuropathy, multiple sclerosis, arthritis, cancer, and diabetes-related pain, among many other painful conditions.

AB 1826, authored by Assembly Member Jared Huffman (D-San Rafael) and Assembly Member Mike Feuer, passed the State Assembly on June 2, 2010. AB 1826 is now pending in the Senate Appropriations Committee, then to the Governor’s office if it passes.

Many people responded to the NFA’s call to action, including Wendy Lewis of El Segundo who wrote on behalf of her 18 year-old daughter, Juliette (“Jett”) who has fibromyalgia. Jett’s doctor prescribed a medication to help control the teen’s searing, migraine-like headaches, but, Wendy wrote, “The insurance company did not allow us to have the medication until we tried another medication. It took a few weeks until we were able to purchase the correct medication. My poor child had to suffer with these headaches while I fought with the insurance companies.  They are allowing the cost of medication to interfere with helping eliminate pain!!!”

Click here to read the complete press release: “Grassroots” efforts by NFA and 25 other organizations hailed as instrumental in passage of Assembly Bill 1826″

Stop unethical practice of “Step Therapy” and help support AB 1826

29 Jun

The National Fibromyalgia Association is supporting the passage of California Assembly Bill 1826, which would end the unethical practice used by insurance companies known as “step therapy” or “fail first.” Step Therapy requires patients try and “fail” up to five older, less expensive medicines before they gain access to the treatment initially prescribed by their doctor—critical medication for Californians suffering from fibromyalgia, neuropathy, multiple sclerosis, arthritis, cancer, and diabetes-related pain, among many other painful conditions.

The NFA has contacted its members in California, urging them to write a letter to the state Legislature in support of AB 1826, and include their personal experiences with Step Therapy.  Click here to view a template of the letter. The bill is expected to go for a vote in the Senate Health Committee on Wednesday, June 30, 2010.

If you feel comfortable sharing your personal experience associated with Step Therapy with the media, the NFA would like to help your voice be heard regarding the need for this legislation. Please send a copy of your letter to:

National Fibromyalgia Association
Attention: Karen Wallace, Project Manager
Email: kwallace@fmaware.org
Fax: 714-921-6920

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