We have updated our report on psoriasis treatments in clinical trials and development and announced today that a record SEVENTY potential new treatments for psoriasis and psoriatic arthritis are in development by the biotech and pharmaceutical industries.
This is an extraordinary statistic, particularly for anyone who had psoriasis in the 1970s or 1980s, when developments were few and far between. This strong foundation of treatments in the pipeline suggests that the explosive growth in new treatment options over the last several years may continue in the years to come. And it means down the road, more psoriasis patients are likely to find a treatment that brings them relief, if not a remedy.
The treatments being studied run the gamut, from medications that treat symptoms to topicals and injectibles that address the underlying immune system cause (or causes). They are being studied by little start-ups and national and international pharmaceutical giants. (A few are even being studied by universities.)
Will they all pan out? Nope. But we're grateful that these companies are taking that financial risk. And picture this: one day, those treatments that successfully run the clinical testing gauntlet may receive FDA approval and become available to the psoriasis community.
We're still reeling from Lestoil for psoriasis (don't do it), but we're forging ahead with this week's latest helpful advice from American and European newspapers for how to treat the genetic, immune system disease psoriasis.
Happy Birthday to...us! Today is our second birthday.
And given the poor state of federal funding of psoriasis research (research on other diseases doubled over the last 10 years while research on psoriasis and psoriatic arthritis fell by 20%), we are considering a Terrible Twos Temper Tantrum in the Halls of Congress. Stay tuned for that.
What would a birthday be without a gift list? Our list has three gift ideas:
2. Sign up at our Psoriasis Volunteer Center and let us know ways you are willing and able to help. Whether you have an hour a year or an hour a week, there are valuable ways you can contribute.
3. Do you drink beer, smoke cigarettes or eat donuts? How about making a tax deductible contribution in the amount of a case of beer, carton of cigarettes or a dozen donuts? We will use your donation to advance our common goals:
* Make psoriasis a national priority.
* Increase research on the disease.
* End the stigma.
* Find a cure.
This is going to be our best year yet. Thanks for your support.
The New York Times covers the business side of the biologic treatments for psoriasis. They report that the manufacturers of these treatments, and many analysts, are surprised that not more patients are using them. The article cites many possible reasons for this, including: a misperception that psoriasis is not a serious disease; the requirements by some insurers that patients try, and fail, on older and cheaper treatments first, and/or imposing high co-pays on these treatments; dermatologists' unfamiliarity with injected treatments and patient reluctance to try them.
The article does an excellent job articulating some of the challenges faced by patients with psoriasis. Brief excerpts:
[Psoriasis is a] condition that is often, though incorrectly, perceived as merely a cosmetic problem. ...
[P]soriasis is marked by red, scaly patches that can be itchy or painful. And because of its potential impact on a patient's social or sexual life, psoriasis can cause severe emotional distress. In some cases the condition is linked to a joint disease known as psoriatic arthritis.
The article also describes some of the battles psoriasis patients must wage with health insurers even when they can show that their treatment is dramatically improving their quality of life:
Bill Fatland is one of the patients unhappy with that approach. Mr. Fatland, 56, who has had psoriasis for more than 30 years, said he had used various creams, but avoided drugs like methotrexate, fearing their side effects. His psoriasis was never under satisfactory control.
About three years ago Mr. Fatland, a retired teacher who lives in Tigard, Ore., tried Enbrel in a clinical trial. "It was like a miracle," he said. "Pretty much looking at me, you wouldn't know I had psoriasis anymore."
But when the trial ended, his insurer, Regence Blue Cross Blue Shield of Oregon, declined to cover the drug unless he tried cheaper therapies first. Over the next two years, Mr. Fatland tried phototherapy twice and methotrexate, but they caused rashes. Only after many appeals, he said, did the insurer approve Enbrel.
It's nice to have the "newspaper of record" get it right.
(Psoriasis Cure Now was interviewed for this article, but was not quoted. Guess we need to speak in better "sound bites.")
There are about 7 million Americans with psoriasis. We vote, we pay taxes. Yet as so many of us are suffering--in pain physical, emotional, and financial--due to psoriasis and psoriatic arthritis, the federal government is preparing to spend just ONE DOLLAR for each of us this year on psoriasis research. That's just TWO PERCENT of what the last Congress had originally planned to spend on the infamous Bridge to Nowhere.
Today we launch a new effort to make it easier for each of us to get involved to ultimately make psoriasis a federal priority, so we get the research funding we need (and deserve).
Our new Psoriasis Volunteer Center will enable you to sign up to help out in ways small or big, once a year or once a week. It is entirely in your hands.
Answer a few questions, tell us a bit about yourself or the types of projects you would consider doing, and we will contact you if and when we could use your help. Whether you are able to speak once a year to a newspaper reporter in California, or are able to volunteer weekly from your home in Illinois, we can deploy your talents to advance our common goals:
Make psoriasis a national priority.
Increase research on the disease.
End the stigma.
Find a cure.
Please, fill out the simple form at our Psoriasis Volunteer Center so we can use your passion and talent effectively. You are in complete control of if, when and how much you help. You can read more about this new effort here. Thanks for your support!
We are linking to an article from Belfast, Northern Ireland today that discusses psoriasis because it is a type of article frequently seen in newspapers across both North America and Europe, one that trivializes psoriasis and also endorses a double-standard in evaluating medical treatments. A loving wife writes in to a columnist about her husband:
My husband suffers dreadfully from psoriasis. His feet, legs, back, chest, groin, elbows, face, scalp are red, scaly and very flaky. He is constantly feeling discomfort. His condition has improved after having some light treatment at the hospital, but there is a long waiting list for him to go back.
From her description, this man has severe psoriasis, which has been helped by receiving either UVB or PUVA treatments (it is not clear which).
So what does the columnist suggest? A visit with a dermatologist to consider more aggressive treatments? (With patients reportedly waiting up to one year to see a derm in the UK, perhaps that is not an option.) The purchase of a home-UVB system? Writing to the House of Commons to urge health care reform to clear the long waits?
No. Instead, the man with severe psoriasis is told to cut back on pork and salt (there go the pork rinds), and take a bunch of potions no one has ever heard of.
The kicker, though, is this line:
[U]sing several other complementary therapies, such as light treatment, can be of benefit for psoriasis sufferers.
So ultraviolet light treatment, which has eight decades of proven clinical experience and testing behind it is called the "complimentary" treatment, while "Indian Pills" are for the really serious cases!
We see "advice" columns like this all the time in U.S. newspapers as well--in many of the same newspapers that howl in protest that the FDA is approving extensively-tested treatments too fast (after years, but not decades). Yet if you add the term "alternative" or "complimentary" to something, suddenly we are rude even to suggest that it undergo clinical testing or prove itself in a blind test. (Even the "Pepsi Challenge" is more rigorous a review than what many of these potions have undergone.)
By all means, if the best that medical science has to offer does not bring you relief from your psoriasis, then try other options that meet your standards for safety and credibility. But "Indian Pills" and Evening Primrose Oil are not going to solve the challenges faced by the tens of millions of people with psoriasis worldwide (and psoriasis has been around for thousands of years--long before Cheetos and hot dogs became dietary staples).
We need to get the public focus and attention directed on the promising research into areas like the immune system and psoriasis' genetic underpinnings, research that is improving our understanding of psoriasis and bringing us better treatments. This relentless drumbeat of your-ham-sandwich-gave-you-your-psoriasis simply undermines the all-important message that psoriasis is serious and deserves significant investments in biomedical research, not just a few bottles of Mrs. Dash Salt Substitute.
Cytochroma looking to hand off CTA018 for psoriasis
Among the myriad potential roadblocks between a treatment being theorized and its eventually reaching patients is a drug candidate's not fitting in with its creator's corporate plan. In other words, companies sometimes begin developing a potential treatment but later decide to focus on other (perhaps more promising) products, or they decide that a product in their pipeline no longer fits with their strategic plan moving forward. For the patient, this means a potentially helpful treatment can be jettisoned or delayed.
Cytochroma also has been developing treatments for cancer and psoriasis, but won't be pushing forward with those, Messner said. That includes a compound aimed at psoriasis that is in Phase II clinical trials.
"We're not abandoning it - we're looking for a partner to take that (psoriasis) product over," he said. "Our focus is on chronic kidney disease."
The political ads didn't tell voters that earlier in the year funding for cancer research was cut for the first time in 30 years. Nor did they explain that a lack of funding slows the pace of scientific discovery and the development of treatments. ... I think this is unwise, but it is what our government has done this past year. I waited patiently for an explanation, some clarification or justification. Ten million cancer survivors deserve an answer. We didn't get one.
It is true that state and federal budgets are constrained by many important responsibilities. But cancer doesn't care about that.
It is time to hold our leaders accountable.
He is right to be upset, and that is despite the significant research funding gains cancer made over the last decade. During that same time, federal psoriasis research funding declined.
If you want more psoriasis research--or more cancer research, for that matter--silence is not an option. You must get involved. A decent place to start would be our home page. ;)
The president of Psoriasis Cure Now will be interviewed live on Wednesday, January 17, 2007 at 5:30 p.m. PST/8:30 EST on HealthTalk Live on the internet:
Vocal patients can have a real impact on public policy, research funding and even future treatment options. Tune in to find out why patient advocacy works and how to get involved.
Also appearing will be a representative from the American Diabetes Association. The show will take your calls live, and is taking your written questions now. The program runs an hour.
But unlike many of his colleagues, Rosenberg believes the psoriasis outbreaks aren't caused by an overactive immune system due to an earlier strep infection. He believes psoriasis is a sign someone still carries the germ.
Now, he is enrolling patients in a study to examine the impact on psoriasis of Bicillin L-A, a penicillin that will be injected five times over three months. This study stems from prior research in which he and his colleagues "reported isolating evidence of a strep infection in the thickened, raised patches of skin that characterize the disease. They found the same evidence in the membrane underlying normal skin cells. The study involved healthy [psoriasis] patients."
Psoriasis patients in or near Memphis who may be interested in participating in this study should call the UT Health Science Center's Department of Preventive Medicine at 448-8400 or (800) 916-2606.
Color vs. content on Rev. Martin Luther King Jr. Day
A note from Michael Paranzino of Psoriasis Cure Now:
"Today, Rev. Martin Luther King Jr. Day, is certainly not about psoriasis, and yet I can't listen to his spectacular I Have A Dream speech without looking at the psoriasis on my own hands.
Who could forget his famous line:
I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.
Those of us with psoriasis also wish to be judged by the content of our characters, not by the appearance of our skin.
Just another reason to celebrate this great man's life."
It seems you can't go a week without a story somewhere touting alternative treatments for psoriasis. This one, from a "Dr. Sarah" in the U.K., lists omega-3 fish oils, evening primrose oil, aloe vera gel, Dead Sea mineral salts/mud, Mahonia ointment (from Oregon grape extract), and Zambesia Botanica cream (from African Kigelia trees). Got that?!
Makes us wonder why we spend time doing nonprofit work when selling alternative and "complementary" medications is the surest way to score that summer place in Tahiti.
Look--if you have too much money in your pocket, there is probably no harm in trying these things. But psoriasis has been around for thousands of years, from Biblical times to Ben Franklin's to today, and Zambesia Botanica has not solved it yet.
We have two requests. Be sure to check back in March, when we will unveil a new part of our website that will cast a skeptical but respectful eye on alternative treatments--not to cure, but to ameliorate the symptoms of, mild to moderate psoriasis. And take two minutes right now to write to Congress urging more psoriasis research so we can get the best and the brightest working on something a little more powerful than sea salt.
We've added a "comments" section at the end of all our Latest News entries. Now, when you read something here and want to sound off on it, simply click on "COMMENTS" at the end of the item and tell us (and the world) what is on your mind! (Comments are moderated--please keep it family-friendly.)
Today's post is frivolous, so please, before you click on these photos, please sign our new letter to Congress (click here for more info). That actually matters.
But these Reuters photos are great fun. Doctor Fish, first promoted in Turkey, then Japan, and now China and elsewhere, purport to improve psoriasis by having these little fish actually nibble at your psoriasis lesions.
Psoriasis Cure Now was interviewed for a Newsweek Japan article about it, but our snickering probably was the reason we were not quoted in the final article. (Or maybe we were quoted...we can't read Japanese.)
In any event, the full-size photos are here and here. Enjoy.
More than 50 new Members of Congress just took office. Many of them (through no fault of their own) probably know almost nothing about the seriousness of psoriasis.
This new Congress, with its voter-provided mandate for change, is our best chance in years to reverse the longstanding psoriasis research funding shortfall.
Congress needs to hear from you. Please take two minutes right now and contact your lawmakers through our online action center. You don't even have to know the names of your lawmakers. You just need to know your address!
Wikipedia, the "free encyclopedia that anyone can edit," is currently the 12th most visited web site in the world--a phenomenal success. Its listings get tons of hits.
So it is very important that its psoriasis entry be accurate. Right now, the entry is excellent in many respects, although we might quibble that fish that nibble on psoriasis in Turkey get as many lines (3) as the new biologics that are transforming people's lives.
But there is one thing we believe is a significant mistake that harms psoriasis patients: the people in charge of the psoriasis site have banished all links to other websites at the end of the psoriasis entry. Called "External Links," these typically provide interested visitors with other places they can go to learn more, or to get active in finding a cure, or writing to Congress, etc. Go to the bottom of the listings for autism and for cancer to see how Wikipedia treats other diseases. For autism, it includes external links broken down into "general information," "community," and "research/advocacy." For cancer, it is broken down by "professional and research" and "support and advocacy."
One of the most important things someone with any disease can do is advocacy related to the disease, which is why both the autism and the cancer listings (as well as the listings for many other disease) include advocacy links at the bottom.
Right now, the many, many people who rely on Wikipedia for their psoriasis knowledge leave without even having the opportunity to learn that they could easily write to Congress, or NIH, or a letter to the editor of their local newspaper, or plan a visit to their lawmakers, etc. This is wrong, and it (once again) trivializes psoriasis, since entries for other diseases do not block these links.
The good news is YOU can change this. Anyone can go to Wikipedia and add links to the psoriasis entry. It takes a few minutes to figure out the correct format, but it could help a LOT of people.
We would do it ourselves except that Wikipedia's rules frown on self-serving edits. Since we believe that, at a minimum, the National Psoriasis Foundation (www.psoriasis.org) and Psoriasis Cure Now (www.psoriasis-cure-now.org) both should be included under Wikipedia's psoriasis entry's (currently deleted) External Links, we can't make those edits because it would be (partially) self-serving. But YOU can.
(A link to Ben Franklin's writings on psoriasis would also be a sensible addition to the Wikipedia entry, but we think the advocacy aspect is far more important to be there.)
So please, if you have a few minutes, please add the National Psoriasis Foundation, Psoriasis Cure Now, and other useful external links to Wikipedia's psoriasis entry. Autism, cancer and countless other disease entries have these links, as they should. People with psoriasis deserve no less.
We agree with Dr. Gott that since it is "safe, cheap and harmless," it merits a mention, if only for laughs.
But this constant drumbeat in the media of silly 'remedies' for psoriasis raises a serious question, whether this harms our ability to get Congress and health insurers to take psoriasis seriously. If banana peels, garlic, etc. can do the trick, why 'waste' precious money on biomedical research and expensive new FDA-approved therapies?
Millions of Americans with psoriasis are hurting. The psoriasis community must be careful we don't hurt ourselves with this incessant chatter about outlandish alleged remedies, when what we really need is more National Institutes of Health research funding and insurance coverage for FDA-approved treatments proven to help.
A new study suggests that veterans with symptoms of post-traumatic stress disorder have higher rates of heart attacks years later.
The new study is the first to document a link between PTSD symptoms and future heart disease, and joins existing evidence that vets with PTSD also have more autoimmune diseases such as arthritis and psoriasis.
The plot thickens (perhaps). Evidence is emerging that psoriasis may increase the risk of heart disease. PTSD and psoriasis show an association. And now PTSD symptoms may be linked to heart disease.
This new study has shortcomings, most notably that it did not control for levels of exercise, and also was not done with PTSD-diagnosed veterans. Rather, these were vets showing some symptoms of PTSD but who fell short of an actual diagnosis.
Still, it adds to the puzzle of psoriasis/stress/inflammation/heart disease/depression/etc., and gives scientists ideas for promising follow-up research.
A recent article in Practical Dermatology magazine, which is sent to dermatologists nationwide, is now available to everyone online. It discusses some of the strategies Psoriasis Cure Now believes are worthwhile as the psoriasis patient community works to increase research on psoriasis and psoriatic arthritis:
President of Psoriasis Cure Now and former congressional staff member Michael Paranzino says that the goal of Psoriasis Cure Now is to increase awareness of psoriasis and increase funding at the Federal level in hopes of ensuring that physicians and patients have access to more and better treatment options for the disease. “Even as government support for biomedical research has doubled over the last decade, federally-funded psoriasis research has been stagnant,” says Mr. Paranzino. He says that right now, of the roughly $30 billion spent annually on biomedical research, federal psoriasis research spending equals about six million dollars a year, which roughly equates to one dollar per patient. He adds that on a per-patient basis, this is lower than spending for any other comparable disease.
The article also notes that we can assist doctors or patients and their loved ones interested in educating their lawmakers about psoriasis either during a visit to our nation's capital or while you are in your home state:
If you or your patients would like to meet face-to-face with federal lawmakers, Psoriasis Cure Now can help. Those planning to visit Washington, D.C. can use the Psoriasis Cure Now website to contact the group, Mr. Paranzino says. Psoriasis Cure Now staff can arrange the meetings, prepare materials, and accompany patients to the meetings. Psoriasis Cure Now can also arrange meetings with lawmakers at the state level.
Let's make 2007 the year we all get involved to educate the public, including our federal lawmakers, about the seriousness of psoriasis.
