Advance Online
Headshots of NPF's Sarah Buchanan and George Gondo, with the #NPFAdvocacy graphic.
Advance Online

Public Health and Psoriatic Disease

Understanding the Chronic Disease Education and Awareness Program at the CDC.

Sarah Buchanan is the Director of Federal Government Relations and Health Policy at the National Psoriasis Foundation (NPF). George Gondo is the Director of Patient-Centered Research, also at NPF. In this article, they discuss work that the Centers for Disease Control and Prevention (CDC) are doing on psoriatic disease, and the potential of this research to improve the quality of life for those living with systemic immune-mediated diseases.

Buchanan: It’s been so much fun working with you and learning about everything you’re doing to improve the care process, from diagnosis to treatment. Can you tell us a little about yourself and how you got into this?

Gondo: My name is George Gondo. I work remotely from my home in Knoxville, Tennessee. I’ve been working in the patient advocacy space for more than 15 years and have led large, federally-funded cooperative agreements for about half of that time.

Working to improve the lives of individuals with chronic diseases or disabilities is very important to me. At some point in our lives, each of us will experience a chronic disease or a disability – or both. Yet, despite this, our health care system and our social life are not well adapted for individuals with chronic diseases or disabilities.

I’ve been working with the National Psoriasis Foundation since 2019, focusing on our patient-centered research. My work at NPF largely involves conducting our patient-facing surveys, analyzing data from those surveys, and disseminating the results through presentations at scientific meetings and publications in peer-reviewed scientific journals. Through this work, I get to collaborate with other staff at NPF, like you, Sarah, and members of our NPF Scientific Advisory Committee and Medical Board.  Additionally, I serve as the Principal Investigator for our Chronic Disease Education and Awareness (CDEA) grant through the CDC.

Buchanan: What is ‘public health’ as it relates to psoriatic disease?

Gondo: That’s an interesting question. At its core, public health is about promoting well-being in communities by preventing people from getting sick or injured and promoting wellness through beneficial behaviors. Psoriasis is not a preventable disease, at least at present. But, it may be possible to prevent comorbidities associated with psoriasis – diseases like psoriatic arthritis (PsA), heart disease, obesity, and depression – through receiving an early diagnosis of psoriasis, making lifestyle changes if needed, and finding an appropriate treatment plan.  

In this sense, public health as it relates to psoriatic disease is about developing the infrastructure to raise awareness about psoriasis as an immune-mediated, systemic inflammatory disease associated with other comorbidities. It also means enabling people with psoriatic disease and their providers to make informed choices about treatments and health screenings, as well as developing interventions that will promote optimal health outcomes for individuals with psoriasis. Without that infrastructure, efforts to develop new treatments may not actually improve the health and wellness of individuals with 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.

Become an Advocate

Learn about the latest policy news, advocacy events near you, and how to stand up for those living with psoriasis and psoriatic arthritis.

Sign up

Stay in the Know.

Expert tips, can’t-miss events and the latest news, straight to your inbox.

National Health Council Standards of ExcellenceCharity NavigatorCommunity Health Charities logoTwill Care logo

Copyright © 1996-2022 National Psoriasis Foundation/USA

Duplication, rebroadcast, republication or other use of content appearing on this website is prohibited without written permission of the National Psoriasis Foundation (NPF).

NPF does not endorse or accept any responsibility for the content of external websites.

NPF does not endorse any specific treatments or medications for psoriasis and psoriatic arthritis.

We use cookies to offer you a better experience and analyze our site traffic. By continuing to use this website, you consent to the use of cookies in accordance with our Privacy Policy.