Decisions made by lawmakers and government agencies, pharmaceutical and biotech companies, health insurers, the news media, and other opinion leaders can directly impact the health and well-being of people with psoriasis and psoriatic arthritis.
This is why 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 our 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.
Our “pro-science” bias.
Potential link between autism and psoriasis.
Increase psoriasis research funding
After being shortchanged for more than a decade, psoriasis and psoriatic arthritis research has recently risen. We need to sustain that momentum to make up for lost time. Psoriasis Cure Now was founded based on our belief that increasing the amount of funding going to psoriasis and psoriatic arthritis research is the SINGLE MOST IMPORTANT way to make our lives better in the years ahead. We have forcefully advocated this position and even ruffled some feathers along the way, but it is at the core of what we are about and will remain so until psoriasis research is fully funded. The good news is, we are making progress. Here is the latest news on the psoriasis research budget — a must-read!
Part of this work involves visiting with Congressional offices to educate them about psoriasis. And we testified about the need for more research funding before the powerful House Subcommittee that sets the federal government’s research budget. Read the Congressional psoriasis testimony that helped set the stage for psoriasis research funding finally to start rising.
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:
* Stelara info page that includes our appearance at an FDA Advisory Committee Hearing urging approval of Stelara (ustekinumab) for psoriasis
* Advisory Committee Hearing on Orencia (abatacept) for rheumatoid arthritis
* Advisory Committee Hearings on Vioxx/COX-2 NSAIDs
* Advisory Committee Hearing on over-the-counter access to topical steroids
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 in the unpopular position of pointing this out and trying to get it changed before it becomes law. 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.
Our “pro-science” bias
Because there is no cure for psoriasis and no shortage of desperate people seeking relief, psoriasis is a magnet for scam-artists and hucksters hawking phony cures in the form of pills, lotions, diets and other fraudulent regimens. It’s not just that these scams do better at clearing out patients’ wallets than clearing their psoriasis symptoms, these exaggerated and/or knowingly false claims do other damage as well: they tend to promote a false view that psoriasis patients have ‘brought this on themselves’ through diet or other lifestyle choices; they spread the falsity that psoriasis can be cured, which makes it harder to convince opinion leaders that psoriasis needs more research funding; and it delays patients from seeking out legitimate treatments that actually could provide some relief. So Psoriasis Cure Now has a “pro-science” bias. We will not permit discussion of untested or phony treatments on our websites, and we fight exaggerated claims when we see them. We even waged a campaign to get Google to stop accepting ads falsely claiming to “cure” this incurable immune system disease. Google has since stopped allowing such ads, although it took pressure from a corporate titan (not us) to finally get them to act.
Potential link between autism and psoriasis
A 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]
We need you actively involved to win these battles! Click here for ways you can help TODAY!