The National Psoriasis Foundation (NPF) has long harnessed the voices of those impacted by psoriatic disease and the people who treat or research the disease to share their stories with lawmakers and regulatory institutions. No one knows the barriers to affordable and comprehensive care better than those who need the care and those who prescribe it.
Because of the work of researchers and health care providers, NPF is able to advocate more effectively for better access to care, more appropriate and affordable treatments and funding for psoriatic disease research. Your advocacy also helps us build relationships with key regulatory and governmental agencies to help accelerate the process of getting new drugs to market and makes compelling cases for additional research funding.
5 Ways Your Participation Helps
1) Preserving the Patient and Provider Relationship
Preserving and strengthening the patient and provider relationship is one of the core facets of our advocacy work. The joint American Academy of Dermatology and NPF guidelines for psoriasis and PsA treatment are a strong example of this – providing health care providers with the most current treatment guidance so that their patients receive quality care and highlighting the importance of this partnership.
A health care provider is in the best position to assess the medical needs of a person with psoriasis or psoriatic arthritis, but insurance utilization management tools, such as step therapy or prior authorization, can undermine that health care provider role and make it more difficult for a patient to access the treatment originally prescribed to them by their provider.
In our advocacy work, providers share their experiences related to how these constraints, as well as time and resource consuming insurance practices can lead to less successful health outcomes for their patients.
Advocating for policies to remove those burdens can help providers get their patients the right treatment at the right time.
What you can do:
2) Reducing Out of Pocket Costs
High out-of-pocket (OOP) costs are a hindrance to patients accessing their necessary treatments or adhering to a treatment plan. For psoriatic disease, biologic medications are some of the most effective treatments but can also be the most expensive and difficult to access option.
Providers are not able to determine what OOP expenses will be for patients when they are in the appointment room, which can lead to frustration or confusion for the patient. Further, when patients cannot afford the OOP costs for their treatment, their health suffers.
What you can do:
Advocate for policies that establish an OOP maximum in Medicare Part D and policies allowing OOP maximums to be spread across the benefit year through smaller, more manageable payments.
At the state level, advocate to address copay accumulator adjustment programs through legislation that requires copay assistance to count toward the deductible/OOP maximum of the patient.
3) Increasing Research Funding and Agency Interaction
Research funding from government agencies like the Centers for Disease Control (CDC) and National Institutes of Health (NIH) is essential in understanding psoriatic disease, best care practices and advancing treatment options for those with psoriatic disease and comorbidities.
NPF also works alongside the CDC to provide perspective that informs their public health agenda. It is important that these institutions hear from patients, researchers and providers to get the clearest picture of the needs of our patient community and those like you who support and care for them.
What you can do:
Work alongside NPF to build relationships with agencies to further psoriatic disease awareness, scientific advancement, public health policy, research and funding.
Lend your expertise and evidence-based information to these agencies to increase their awareness of the issues facing our community.
4) Engaging in Patient-Centered Research
On March 17, NPF celebrated the 5-year anniversary of a very important moment in our history. The Food and Drug Administration (FDA) held a patient focused drug development (PFDD) meeting on psoriasis to learn from patient perspectives on the daily impact of psoriatic disease, treatment approaches and factors patients consider in choosing a treatment.
To ensure the FDA gained an understanding of the diverse experiences of people with psoriatic disease, NPF conducted significant outreach to our community to make them aware of the opportunity to tell their stories directly to the agency.
The people of our community made this among the largest and most engaged of the FDA PFDD meetings to that point. And the FDA still references this as one of the more successful meetings.
As NPF continues to work with the FDA on patient-centered outcomes, the provider and researcher perspective is key to our success.
What you can do:
Encourage patients to share their story and participate in the process by taking part in the NPF Annual Survey and Advocacy Survey, as well as in other patient-centered research efforts.
Lend your experience and voice to the efforts of NPF in future endeavors.
5) Providing Stability and Guidance in a Perpetually Changing Environment
When COVID-19 changed the way the world operated, the voices of patients and providers were essential to the efforts of NPF in our work to make telemedicine accessible for our community. The real-time feedback from our health care provider community and their collective experience with telemedicine proved invaluable as we considered engaging on legislation and regulations regarding telehealth.
With a lack of data and reliable information surrounding the impacts of COVID-19 on the psoriatic disease community, NPF once again turned to experts in dermatology, rheumatology as well as specialists in infection disease and pulmonary care to form the NPF COVID-19 Task Force, which to this day continues to provide guidance to the community regarding treatment, mitigation and vaccines.
What you can do:
Lend your voice to our efforts by taking action today to make an impact on issues NPF is addressing right now, including the emerging access challenges that are impacting you and your patients, like increasing the ease of access to telemedicine.
Share the NPF Task Force guidance statements for people with psoriatic disease during the COVID-19 pandemic and direct individuals to the NPF COVID-19 Resource Center.