A History of Psoriasis Cure Now
Psoriasis Cure Now, a nonprofit organization, was launched in 2005 in response to a chart of medical research funding at the U.S. National Institutes of Health (NIH), the largest funder of biomedical research in the world. The chart, from the early years of the new millennium, looked like this:
It showed that even as funding for research on other diseases had soared, funding for research on psoriasis and psoriatic arthritis had flatlined. Not just for one year, but for many, many years. Simply put, psoriasis was not being taken seriously by the federal government, and it was contributing to the limited options available to treat psoriasis patients at the turn of the century. Our primary mission immediately became getting psoriasis and psoriatic arthritis their fair share of federal research dollars.
So we built a website, with a strategy roughly modeled on a famous line from a Hollywood movie: “If you build it, they will come.” The key feature was a form that made it simple for psoriasis patients and their loved ones to write their lawmakers in support of increasing psoriasis research funding. In the years that followed, we would do whatever it took to get the attention of decision makers, educate them about psoriatic disease, and move them to action.
Some of it was silly: On Benjamin Franklin’s birthday, we hired a Franklin “look-alike” – well, the one who actually looked like him charged $7,000 plus airfare, so we got one with a vague resemblance for a couple hundred dollars. (He turned out to be a great bargain.) He walked the Halls of Congress handing out psoriasis fact cards to Congressional staffers. The materials demonstrated how psoriasis research was underfunded. Two prominent Beltway newspapers – Roll Call and The Hill – covered the stunt, extending its impact throughout official Washington.
We chose Ben Franklin as part of our campaign, in part, because we also see value in educating the nation on a little-known fact: Not only had Ben Franklin battled psoriasis, but he did so during some of his most consequential days, including while editing the Declaration of Independence, and while serving in France seeking French support for the colonies in the war effort. Could we – and especially children with psoriasis – possibly have a better psoriasis patient role model?! With our gentle prodding, the Washington Post’s weekly Health section put the story of Franklin’s psoriasis on its front page, quoting Franklin extensively from his writings about his battles with the disease; and the Post gave Psoriasis Cure Now a nice shout-out as well.
With all due respect to our Franklin look-a-like, we had more serious efforts underway as well. We were able to secure a coveted invitation for our president to testify before the key House Appropriations Subcommittee that determines the annual research budget for NIH. No one could remember psoriasis advocates being asked to testify previously. His message, in a nutshell: psoriasis is serious, we are hurting, and we have not been getting our fair share of research funding, which is desperately needed. TV cameras were present, but alas, were there to film Academy Award winner Julianne Moore, who testified next (about a different issue). Still, our testimony put the psoriasis community’s needs front and center for those determining the NIH research budget.
We also worked to develop psoriasis advocates on both sides of the aisle. The GOP had invited us to testify, and Democratic Congresswoman Rosa DeLauro of Connecticut would also actively champion our cause. She successfully fought for language her staff had written with our assistance that informed NIH that Congress wanted more psoriasis research funded. Her language was included for the next two years.
We later awarded her the Psoriasis Cure Now Health Care Advocate of the Year award (along with the others who most helped us, the late Sen. Arlen Specter and the late Rep. Ralph Regula). The prize was a bust, of course, of Benjamin Franklin, perfect for office display. Congresswoman DeLauro is now the Chairwoman of the very House Appropriations Subcommittee that sets the annual biomedical research budget at NIH. It’s great to have such a dedicated and powerful lawmaker, and her staff, in our corner!
Suddenly, the psoriasis research budget finally sprouted wings. The federal increases in psoriasis research funding since 2005 have totaled tens of millions of dollars over the no-growth track psoriasis research had been on. These increases will continue to bear fruit in scientific advances for years to come.
It took the hard work of numerous nonprofits and thousands of psoriasis patients, along with support from the pharmaceutical and biotech industries, the great expertise of the scientific and medical communities, and our Congressional allies, to make this goal a reality.
Meanwhile, Psoriasis Cure Now had other projects going. In addition to the website, we brought psoriasis advocacy to Facebook, Twitter, and YouTube. We ran YouTube video contests to get would-be filmmakers engaged in delivering our message. Dozens of creative people put their talents to work on behalf of the psoriasis patient community. Here are just two examples.
We also distributed body-positive Psoriasis Cure Now Calendars that featured stories of women, men, and children and their serious battles with psoriasis and psoriatic arthritis. Ten thousand copies were distributed annually to key audiences, including all Members of Congress, journalists coast to coast, and dermatologists. These started years before body-positive Instagram selfies became a thing – since Instagram had not yet been invented!
Finally, we are always up for a simple attention-getter that can make an impact on influential audiences. One of our gambits was called the “60 Second Google Challenge for Congressional Staffers.” Congressional staffers are incredibly busy, and most have recycling bins next to their desks for all of the giant briefing books that each interest group leaves after their meeting (staffers can meet with five or even 10 groups each day, so most of the materials cannot possibly be read). So we simply emailed all of Congress’s key staff with a catchy subject line and simple challenge, along the lines of: “We know you are busy, so we won’t bother you with a meeting request at this time. Instead, we challenge you – we might even say dare you – to spend just 60 seconds looking at pictures of psoriasis on Google. Simply go to Google, search ‘psoriasis,’ then click on Images. One minute later, stop. After that minute, we think you will agree that psoriasis and psoriatic arthritis need more research funding. Thank you for that minute, and for reading this email.”
