Today's post from neuropathy.org (see link below) the home site for the American Neuropathy Association, is another plea for people to seriously consider better advocating for more progress in both the future and current treatment of neuropathy. It must be serious if they are also asking for more funds to back future campaigns but aside from that and aside from the direct connection to the Neuropathy Association, it's a good idea to stimulate people to actively pursue neuropathy issues. It remains a largely unknown disease, despite the staggering figures and health authorities across the world tend to put it on the back burner, in favour of 'sexier' health problems like cancer. It's a short sighted approach because the lost 'work' days due to neuropathic problems cost every country millions in the long run. It's up to us then, on an individual and local level, to give neuropathy a higher profile in the public consciousness. Whatever you can do and however small, will sow the seeds in the minds of decision makers and funders of research projects.
Dear Friend,
“I just wish lawmakers could feel what neuropathy patients feel—even for 5 minutes. These cuts would never have happened.”
[R.R.’s Facebook post about neuropathy Medicare reimbursement cuts]
YOU hold the power in the fight against neuropathy. Doing nothing leads to nothing. The stakes are high and risks are real when people sit on the sidelines and do not engage.
That was my message to you a year and half ago when our community was in shock from extreme cutbacks in care and treatment resulting from Medicare reimbursement cuts for EMG/nerve conduction studies—neuropathy’s primary diagnostic tools. At the time, our advocacy campaign had reached out to nearly 100,000 people using all of our electronic communications channels, repeatedly asking everyone—patients, caregivers, professionals—to tell their representatives how detrimental these cuts would be.
Still the cuts went through. And, “How could/did this happen?” messages came in to us as patients began encountering hurdles in accessing physicians, tests, and care.R.R.’s Facebook post summarized our community’s anger at the time; many on Facebook “liked” her comment.
But here’s the problem: R.R. did not submit a letter … nor did any of the Facebook members who agreed with her! None of them took any action to oppose these cuts. In fact, of the 100,000 people The Neuropathy Association reached out to, less than 1,000 actually wrote to their representatives.
Another example: in Fall 2012 we asked you to write to the FDA urging that neuropathy be included on the final list of 16 diseases selected for the FDA’s five-year Patient-Focused Drug Development Program. Neuropathy did not make the list but idiopathic pulmonary fibrosis (PF) did—and PF was not even on the original list of 39 disease candidates while neuropathy was. How did that happen? “The FDA heard the voice of the PF community,” said the Coalition for Pulmonary Fibrosis (CPF) in their press release. That means: PF made the FDA list even though it wasn’t up for consideration because their community took action. And, neuropathy was cut because the FDA did not hear from enough individuals in our community. So, yes — your voice DOES make a difference.
History repeats itself… and, now, two years later we are at this point again: recently we sent out an advocacy alert asking you to write to PDUFA to have neuropathy once again considered for their latest disease list (which currently does include rarer forms of neuropathy including CIDP). More information on the current advocacy appeal is featured below. Whether CIDP stays on the list…and/or whether other types of neuropathy are added to the list…is in YOUR hands.
In addition, I alerted you last month that the Federal Government is about to release for public comment a first-ever National Pain Care Strategy. There is a strong likelihood that the document will be released before the end of the year…and when that happens, we will need all members of our community to advocate and give policymakers not only their feedback, but tell them the urgency of implementing pain care improvements for the over 100 million who are suffering with chronic pain.
Advocacy can--and does--lead to great change. Just look at the clinical trial opportunity detailed below that is being offered at our Neuropathy Association-designed Center of Excellence at the University of Kansas in order to evaluate (and thereby improve) the use of a range of medications for idiopathic neuropathic pain. The trial is being funded by the Federal entity PCORI (Patient-Centered Outcomes Research Institute), and this trial’s selection for funding is the direct result of advocacy by The Neuropathy Association and the neuropathy community to promote its inclusion in the funding program.
But as the saying goes, those who fail to learn from history are doomed to repeat it: if our community does not engage on these advocacy campaigns that promise to change the future of neuropathy care and treatment in the very near term, all of us risk experiencing many more years of inadequate care, imperfect therapies, and immeasurable pain and suffering. The possibility for tangible improvements is within our grasp: are you willing to, once again, let real hope and very real opportunities slip away and risk sending us backwards?
TAKE ACTION NOW: ADVOCATE FOR CHANGE! Be sure to respond to our advocacy appeals this Fall/Winter season. They usually don’t involve more than 2-5 minutes of your time…is that too much to ask to ensure hope for a better tomorrow?
In addition, as we have also shared with you before, our summer fundraising campaign fell $25,000 short…and that has already caused us to limit our work during this critical fourth quarter period. The holiday giving season is about to kick off, and your gifts this season truly do sustain us. Momentum is strong NOW and the chance for real change is here. If our community misses the opportunity, it may not come again for a long time...
Please keep us in the fight, and keep us here for you! Whether a new or renewed gift, every $1, $10, $100, or $1,000 gift supports the work you see outlined below in thisyour free monthly newsletter. Please make your gift TODAY to keep us fighting for you and help bridge our funding gap! We are your Association…and this is your future at stake. Don’t risk doing nothing to advocate for or to help out with your neuropathy cause: together, we are stronger…and, together, we will beat neuropathy. Thank you for your support.
Sincerely,
Tina M. Tockarshewsky
http://www.neuropathy.org/site/MessageViewer?dlv_id=19581&em_id=15581.0
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