Overcoming obstacles for psoriasis patients: updates on National Psoriasis Foundation legislative efforts.
By Meg Hession, MS4
As medical students, we are all familiar with the hallmark erythematous, scaling, pruritic lesions of psoriasis, as taught to us in second year lectures or USMLE study guides. What these books don’t teach us, however, is the less tangible—but no less significant—effects that psoriasis can have on the mental well-being and self-image of patients affected by the disease. Furthermore, psoriasis is associated with a number of other medical conditions. For example, up to 30% of patients with psoriasis will develop the aching, stiff joints of psoriatic arthritis. Moreover, new research has shown that psoriasis is associated with a number of other chronic medical conditions, including diabetes, obesity, hypertension, cardiovascular disease, liver disease and Crohn’s disease. Each year, Americans suffering from this condition lose roughly 56 million hours of work, accounting for approximately 40% of the estimated $11.25 billion in health care costs of psoriasis annually.
Despite the emotional, physical and financial burden imposed by psoriasis, the federal government currently spends a mere $1.38 per patient annually on psoriasis research. Furthermore, access to care represents a significant barrier for patients and providers, as high copayments and restrictive plans limit treatment options for patients. For example, insurance companies often ration care by requiring symptoms to be present for a certain amount of time before they will cover treatment. Other companies impose restrictions by limiting the amount of time they will cover a particular drug--for example 6 months--even though the nature of psoriasis is that it is a chronic, often lifelong disease. Furthermore, many policies have instituted a system of “step therapy,” whereby patients must first undergo a series of trials on other medications for a specified time interval--often ones that have already failed to work in the past--before they approve use of the originally prescribed treatment. This is a common scenario for patients with very severe disease, who seek the slightly more expensive--yet more effective--biologic agents such as Humira or Enbrel. Indeed, these biologic agents are often defined by insurance companies as a “specialty tier four” drug--a higher formulary category which requires higher payments.
The issue of copayments is also particularly worrisome for patients seeking phototherapy. For example, a 2008 National Psoriasis Foundation survey of nearly 200 dermatologists found that the most common reason among patients for discontinuing light therapy was the cost. With co-payments of up to $50 per visit (the therapy typically requires three visits per week), patients simply cannot afford their treatment.
In light of these disturbing obstacles, efforts are underway by the National Psoriasis Foundation to overhaul such bureaucratic hurdles in order to achieve the goal of improved disease management and symptomatic relief for patients suffering from psoriasis. Already, the NRF has sent letters to insurance commissioners in California, Massachusetts, Missouri, New York, Texas and Utah asking for their help in convincing insurance companies to remove many of their restrictions. Furthermore, this access to care initiative is linked to the even larger Psoriasis and Psoriatic Arthritis Research, Cure and Care Act (PPARCCA) of 2009. This bill, originally drafted in 2007 was re-introduced in the House of Representatives by Rep. David Wu (D-Oregon) in February, 2009 and in the Senate by Robert Menendez (D-New Jersey) in March, 2009. The bill calls for four specific objectives: first, the expansion of NIH-funded research on psoriasis; second, the development of a national patient registry via the Center for Disease Control; third, the establishment of an annual summit to discuss current aspects of research and patient care. The fourth and final objective of the bill calls for the Institute of Medicine to evaluate access to care for psoriasis patients and make recommendations for improvement.
Specifically, the National Psoriasis Foundation also called for a $1.5 million appropriation in 2010 to support the development of the CDC-based national patient registry. After months of lobbying on behalf of this bill, the efforts of psoriasis advocates were brought to fruition on July 17, 2009, when the U.S. House of Representatives approved this $1.5 million funding request. Information gathered from this registry will help researchers further understand the epidemiology of psoriasis and its association with other diseases. In order for this funding to take effect, the Senate must also approve its version of the bill and an agreement must be reached among House and Senate representatives as to the final appropriation for the fiscal year 2010. And finally, the bill must be approved by the President.
So how can you help?
Further advocacy efforts are needed to propel Congress into its final approval of these appropriations, and to garner further support in the House and Senate for the PPARCCA. The simple act of calling your Congressional office or writing an email can go a long way.
To find out whether representatives in your State support the bill visit:
Join the Psoriasis Action Network to find out ways you can help in your area. Register at:
“Congress Takes on Nation’s Most Prevalent Autoimmune Disease.” National Psoriasis Foundation. March 11, 2009. Accessed August 18, 2009. http://www.psoriasis.org/netcommunity/Page.aspx?pid=481
“High Copayments Limit Treatment Options for Psoriasis Patients.” National Psoriasis Foundation. January 14, 2009. Accessed August 18, 2009.
National Psoriasis Foundation. Access to Care Issue Brief. February 2009. Accessed August 18, 2009. http://www.psoriasis.org/NetCommunity/Document.Doc?id=344