'Psoriasis Cure Now!' Begins Web Petition to Congress

[peterb]

1/26/2005 7:45:00 AM

KENSINGTON, Md., Jan. 26 /U.S. Newswire/ -- Spurred to action by the recent disclosure that federal research on psoriasis has been cut over the last decade while research on other diseases has soared nearly 150 percent, a new psoriasis patient advocacy group launched today. "Psoriasis Cure Now!" will educate lawmakers, other opinion leaders and the general public about the two most pressing issues facing psoriasis patients: the need for more research, and the importance of patient access to the full range of treatments for the disease.

"Congress will be disturbed to learn that for a full decade, 6.5 million of their constituents with psoriasis and psoriatic arthritis have been shortchanged in federally funded research," said Michael Paranzino, the group's founder and a psoriasis patient for more than 20 years. "It is unconscionable that psoriasis research has languished throughout the biggest increase in biomedical research funding in world history."

According to data provided by the National Institutes of Health (NIH), psoriasis research at its skin institute, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), declined from $4.7 million in 1995 to $4.1 million in 2004, a cut of 13 percent. In that same period, NIH funding soared 148 percent, from $11.3 billion to $28 billion. Government funding for psoriasis research now stands at just 77 cents per patient annually, a tiny fraction of the amount spent on many other diseases of comparable severity and impact.

"Today we are launching our web-based petition to Congress, calling on them to increase federal funding for research on psoriasis and psoriatic arthritis," Paranzino continued. "The 6.5 million Americans with psoriasis need to know that Congress stands with them as they battle this disease and seek better treatments for it."

Psoriasis is an incurable, non-contagious disease of the immune system that can first strike at any age, causing painful skin lesions, and often, arthritic symptoms. A 1999 study found that psoriasis causes reductions in physical and mental functioning comparable to that seen in diabetes, heart disease, hypertension, depression and other diseases. Psoriasis costs the U.S. economy billions annually.

"NIH research has led to dramatic gains on so many fronts," Paranzino concluded. "It's time to let psoriasis patients in on the progress."

[peterb]

This is the link to above story to support the campaign.

http://www.psorcurenow.org/

[yebvas]

Thank You

[Ian]

Wow.

That really is a disgrace and almost completely dismissive of the sufferers of Psoriasis. Is Psoriasis really not a big deal then? Objectively people can look at Psoriasis and say "Oh well, it's just a skin disease you've still got your arms and legs haven't you? Be grateful for that."

Of course who wouldn't be grateful yet what I'm getting at is how important the subjective reality is for someone with Psoariasis...how it makes them feel....how it affects their life...their confidence....their relationships.

Psoriasis is not just a few red patches on a sufferers body.

[Gary]

Anyone that knows me, knows that I want more than anything for there to be a universal cure for psoriasis.  I have so many friends that it affects, and my scalp and legs remind me every day that there has to be something better out there than what currently exists.

Now, with that said, here's also another way to look at the topic of federally funding research for a psoriasis cure:

If Big Pharmas spend hundreds of millions of dollars a year on trying to find a cure (to sell to the public), then what are the chances of federal research accomplishing the same goal on less than that?  It's highly unlikely that the research would be shared between either party.

So I actually agree that federal funds would be better off being spent on something that isn't such a boondoggle for them - I would assume that this would also massage the workforce by creating the need for those Big Pharmas to keep scientists and researchers hired full-time in order to do so.

I don't believe it's always a case of "evil federal cutbacks".  In this case... I dunno... it seems a bit sensible when you shed some like on the research conducted by Big Pharma.

The above article almost sounds like another non-profit organization whining over the fact that they won't be able to steal as much from the general public as they did in the past.

Anyone have a counterpoint to this?  I'm curious to hear it.

[electric_ian]

Are the big phamas looking for a cure or a good treatment that you need to keep taking??
Ian
Maybe im being unkind here but sometimes you wonder if profits come first..

[puppydogeyes]

Psoriasis is not just a few red patches on a sufferers body.
 

 
 

EXACTLY!!! To some people, they think Psoriasis is 'just a rash'....maybe they should live just one day in our shoes and see if they change their minds...methinks they would!!!!

[Gary]

Are the big phamas looking for a cure or a good treatment that you need to keep taking??

Well, I'm convinced from the research that I've been exposed to that there will never be a "cure" per-se.  It's the harshest conclusion that I've come to terms with, having spoken to several authorities on the subject first-hand.

There will be drugs to increase the lengths of remission  (with minimal side-effects), and hopefully to the length of an entire lifespan without having to switch onto another - but consider two factors: a) Psoriasis is an auto-immune disease, and b) The human body will always find ways of pushing out anything foreign to it - always returning itself to it's natural state, even if it's a defective natural state.   Treating auto-immune diseases is comparable to blowdrying your hair in the middle of a rainstorm.

So, this means that either way, a "cure" will involve reocurring treatment, even if it's needed to be adminsitered only a few times every twenty years, once they nail down something that actually controls the condition to an extreme and is treatable on all the variations of psoriasis that exist.

Skin conditions as a whole are some of the most cryptic medical conditions that plague human beings.

[MarieC]

I agree, Gary. I've been on several topicals that actually knocked out my eczema for about a year and a half at the most, which is luckier than some people, but I ALWAYS become tolerant to them. I really don't think there are any drugs, oral or topical out there that will throw any skin condition into remission for a lifetime, like you said, especially with immune system disorders.

[Yenrab04]

I have this problem on and around my nose!!!! It is so bad and I don't know what to do.

[chocs]

hi

Any skin condition that is not life threatening will be put to the bottom of the list for that reason,having said that money comes first with everything now which i think is pretty sad.all the time pharm giants and research are earning money out of treatments why do they want to find a cure!!!

[Gary]

Some might say the same for many non-profit lobbying organizations.  What function would they really serve at that point?

Either way, a "cure" would probably be too expensive for most people to afford.  A lot like the stabilizing injection they have these days for AIDS; it's available in limited quantity and in most cases only available to the affluent.

[erol1234]

hi

Any skin condition that is not life threatening will be put to the bottom of the list for that reason,having said that money comes first with everything now which i think is pretty sad.all the time pharm giants and research are earning money out of treatments why do they want to find a cure!!!

absolutely correct

[Psoriasis Advocate]

The National Psoriasis Foundation is actually the oldest, largest and most effective advocate for the psoriasis community. I've participated in their political advocacy efforts for about two years and Congress is beginning to pay attention to the needs of the psoriasis community.

The Psoriasis Foundation has a letter-writing campaign going that has generated more than 7,000 letters to Congress! If any Americans here haven't yet participated in this campaign, please visit this link. 

The way it's set up, it really takes less than 2 minutes to send messages to your representative and two senators. There's a sample email with space for you to add your own comments. I think it's pretty cool.

THANKS!