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THIS PAGE SHOULD BE COMPLETE BY MARCH 15, 2008 -- PLEASE FORGIVE THE DUST AS WE OVERHAUL OUR WEBSITE.
The federal government spent one dollar per patient on psoriasis research last year, while spending $30 BILLION on other diseases.
Some insurers block psoriasis patients from receiving cutting-edge treatments.
The FDA recently blocked a psoriasis treatment from reaching patients, because of concerns that people with a different condition might misuse the product.
For these and many other reasons, it is important for people with psoriasis and psoriatic arthritis, and their loved ones, to be informed about public policy issues that affect our community, and also to get ENERGIZED to make sure their voices are heard. We in the psoriasis community can no longer afford to be silent. Here are the issues Psoriasis Cure Now is most actively involved with at this time.
Increase psoriasis research funding.
Access to treatments: FDA hearings.
Access to treatments: insurance coverage.
Arthritis legislation.
Google's phony ads for psoriasis "cures".
Psoriasis Cure Now Health Care Advocate of the Year Winners.
Long-term monitoring of psoriasis treatment safety.
Potential link between autism and psoriasis.
Increase psoriasis research funding
Psoriasis continues to be severely underfunded by the federal government. Of the nearly $30 billion spent on biomedical research last year, only about $7 million went to research on psoriasis and psoriatic arthritis. This is not wise public policy and we are working to educate Congress about why this must change.
Click here for our psoriasis research funding page. [page coming soon]
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Access to treatments
Treatments do not do patients any good if they cannot access them due to government hurdles or economic ones. Two key gatekeepers on access issues are the U.S. Food and Drug Administration and the health insurance industry.
FDA advisory committee hearings
The Food and Drug Administration is the gatekeeper that decides if a treatment will reach the American people. If they are too lax, dangerous or ineffective medications can reach patients, with harmful consequences. If they are too stringent, people facing debilitating or even life-threatening diseases can be denied access to treatments that could help improve or even extend their lives.
We work to ensure that the FDA fully recognizes the seriousness of psoriasis, so it does not deny psoriasis patients effective treatments on the basis of underestimating the damage that psoriasis can do to someone’s quality of life. We believe that in the vast majority of cases, patients working with their physicians can make a better determination about a treatment’s costs and benefits for that patient than the government can make for all patients in a one-size-fits-all determination. Put differently, when the FDA approves a product, a patient can still refuse to use it, but if the FDA blocks access to a treatment, the patient is denied an option that might be best for that particular patient.
We speak at FDA Advisory Committee hearings to make sure the psoriasis and psoriatic arthritis patient community is heard on issues that affect us.
For more information, click on our past testimony before these FDA panels:
* Advisory Committee Hearings on Vioxx/COX-2 NSAIDs
* Advisory Committee Hearing on over-the-counter access to topical steroids
* Advisory Committee Hearing on Orencia (abatacept) for rheumatoid arthritis
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Access to treatments: insurance coverage
While many insurers do a fine job of covering psoriasis and psoriatic arthritis treatments for their patients, other insurers impose unfair hurdles or completely deny coverage of some very effective psoriasis treatments, arguing in some cases that treating psoriasis is not worth the high cost of some therapies. We include a discussion of this in every Capitol Hill meeting we do, and we mentioned it in our Congressional testimony, as Congress may need to step in in cases where insurers refuse to fulfill their obligations to their insureds. We may expand our involvement in this issue next year. If you would like to volunteer on this issue, please sign up at our volunteer page so we can bring you on board our efforts.
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Arthritis legislation
There is a major bill pending in Congress that would significantly expand government support for arthritis programs and research. That’s the good news. The bad news is the bill never mentions psoriatic arthritis. This is unacceptable, and Psoriasis Cure Now is leading the charge to get the bill revised to expand research for psoriatic arthritis and other under-served and poorly understood types of arthritis. It’s not often that we find ourselves differing on a policy issue with groups we admire like the Arthritis Foundation and the National Psoriasis Foundation--the leading backers of the bill‘s current language--but we do not think the most important arthritis legislation that is likely to pass this decade should be signed into law without unequivocally expanding research on psoriatic arthritis, which is currently woefully underfunded. Read more here. [link coming soon]
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Google's phony ads for psoriasis "cures"
Millions of people seek out health information on the internet every day. The place most people begin their research is Google.com. For this reason, Psoriasis Cure Now is trying to convince Google to end its policy of permitting ads to make knowingly false, dishonest claims for psoriasis “cures.” There is no cure for psoriasis. Google even has a policy explicitly prohibiting ads for “miracle cures.” But in the case of psoriasis, they allow these ads (and profit from them), and it is psoriasis patients who suffer. Read more here.
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Psoriasis Cure Now Health Care Advocate of the Year Winners
Psoriasis Cure Now Health Care Advocate of the Year Winners – learn more about our annual prizes to those leaders who are fighting on our behalf.
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Long-term monitoring of psoriasis treatment safety
[THIS SECTION COMING SOON]
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Potential link between autism and psoriasis
A recent study looked at a large database of mothers and found that mothers with psoriasis have a higher rate of children with an autism spectrum disorder. This could be a valuable finding for both diseases, and merits further examination. We have been urging Congress to support follow-up research on this apparent link.
* See our letter to Congress on the reported autism-psoriasis link.
* See Congressional Report language that addresses our concerns on this issue. [link coming soon]
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We need you actively involved to win these battles! Click here for ways you can help TODAY!
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