Public Health and Psoriatic Disease

Buchanan: Wow, I was familiar with the search for better treatments and cures, and I can see now that we also need an infrastructure to support awareness and healthy decision-making. Is that how NPF got involved with the CDC?

Gondo: Yes, the CDC is a government agency that leads U.S. public health work. You may have heard of them through their work on the COVID-19 pandemic. Recognizing that psoriasis is a chronic inflammatory disease associated with comorbidities, such as cardiovascular disease and obesity, and that little work had been done in the field of public health on the topic of psoriasis, NPF began pushing the CDC to support public health efforts on psoriatic disease. Finally, in 2010, the CDC collaborated with us and other thought leaders to develop a public health agenda for psoriasis which was published in 2013.

Buchanan: So what has the CDC done on psoriatic disease since the publication of the agenda?

Gondo: After the public health agenda was developed, the CDC published a study of the prevalence of psoriasis, and many private entities like NPF have done their own work to implement the agenda. Unfortunately, the CDC did not have a lot of additional funding or resources to pursue the recommendations from the agenda. Then in 2020, Congress created the CDEA Program within the CDC. NPF submitted an application through this program to raise awareness about psoriasis as an immune-mediated, systemic inflammatory disease associated with significant burden of disease and comorbidities. Luckily, we were one of four organizations to be funded through this opportunity. We’re using that funding to continue to make headway on building that infrastructure we talked about.

Buchanan: That’s impressive that NPF was a leader. To me, that speaks to the need within our community to improve diagnosis and raise awareness of the options to stay healthy. What are you doing with the grant?

Gondo: Our project is split into four objectives that I’ll outline below. Because there was a long gap in activities between the 2013 public health agenda and our work starting in 2020, some of this involved dusting off the cobwebs. This included seeing where advances had been realized, identifying areas where our understanding of psoriasis has evolved since that agenda was published, and addressing emerging issues related to psoriasis. For example, a lot of people don’t realize that living with psoriatic disease increases their risk of developing co-occurring conditions like diabetes and heart disease, or that having heart disease and diabetes may affect how they treat their psoriasis. Additionally, health disparities – especially those experienced by people of color – have become an increasingly important topic to address. Using this approach, and guided by the goals of the CDEA program, we developed the following four grant objectives:

1. Update and disseminate the current data we have about psoriatic disease.
2. Develop new survey tools to fill in the gaps in our data.
3. Educate the public about psoriatic disease and its co-occurring conditions (comorbidities).
4. Educate providers and public health officials about psoriatic disease and its co-occurring conditions, and improve diagnosis, particularly among people of color.

Buchanan: So are we done with public health now?

Gondo: Oh no, we’re just getting started. Developing this infrastructure takes time and we need stability in the CDC program to fully build it out and make lasting improvements. The first grant that we received from the CDEA Program helped us lay the groundwork. In it, we updated the data, updated surveillance instruments, and began raising awareness of underserved and underrecognized aspects of psoriatic disease. However, for this work to have traction and not lose progress, we’re hoping that the CDC will continue to invest in psoriatic disease research and understanding.

One thing we’re realizing is that common public health interventions for diabetes and cardiovascular disease do not take into account people living with psoriatic disease. For example, a person living with a skin disease may find certain kinds of exercise difficult or may wish to avoid sweating. Additionally, traditional low-impact exercises, like swimming, may not be appropriate for someone with psoriasis and PsA as the chlorine in the pool may irritate their skin.

We’re hopeful the CDC will maintain stability in its psoriatic disease work and consider focusing on refining public health interventions for those living with psoriatic disease. There is still much to learn about how to optimize the health of individuals with psoriatic disease, and the CDC can be a major driver of this work through the CDEA program.

Buchanan: I’m sold. What can I do, and what can other advocates do to help?

Gondo: It would be helpful if Congress encouraged the CDC to continue to support this kind of work. Asking your legislators to grow the funding for the CDC CDEA Program, and to encourage work on psoriatic disease will go a long way.

To that end, I’m excited to be one of 70 advocates and NPF staff members that are gathering to participate in our annual Capitol Hill Day. For the first time ever, we’re doing a hybrid event and will organize both in-person and virtual meetings. Capitol Hill Day participants will advocate for funding for the Chronic Disease Education and Awareness Program as well as a focus on psoriatic disease.

Advocates that want to get involved can also participate by using our template to email your legislators on this topic as well. It’s fast and very easy!

Buchanan: Thanks, George. This was informative and helpful – always great chatting with you!

Gondo: Thank you for having me. I enjoy collaborating with you and the rest of the Government Relations and Advocacy staff. The work you do is incredibly important to the psoriatic disease community.