Leah Howard, Chief Operating Officer from the National Psoriasis Foundation or NPF, a non-profit organization that supports patients with psoriatic arthritis, discusses key information on the impact of this disease, the results of the PsA Narrative surveys, as well as ways that patients can work with their doctor to make sure their voice is heard. NPF is a collaborative partner with Pfizer on this initiative.
Leah McCormick Howard, J.D., joined the National Psoriasis Foundation in 2012. As the NPF’s first Chief Operating Officer, Ms. Howard provides the strategic direction, vision, and leadership to all the Foundation’s mission-related functions (excepting research) – government relations and advocacy, marketing and communications, education and outreach, human resources and the NPF’s Patient Navigation Center. Reporting to the CEO, she is responsible for ensuring the Foundation has proper operational controls, administrative and reporting procedures, and people systems in place to effectively grow the organization and achieve the Foundation’s strategic plan goals. Hired to direct the NPF Government Relations and Advocacy department, Ms. Howard served in that role for five years before being promoted from Vice President of Government Relations and Advocacy to the newly created executive position of Chief Operating Officer. She brings to her role nearly 20 years of experience working with national health and disability organizations, local governments and leading health care and research institutions. She has a Bachelor of Arts in government and international relations from the University of Notre Dame and a law degree from George Mason University School of Law.
Neal Howard: Hello and welcome to Health Professional Radio. I’m your host Neal Howard, thank you for joining us once again. Well it’s October and Halloween is right around the corner. That time of year when a lot of us are associating this time with masks but for a lot of folks, they may be hiding behind a mask every day. Here to explain what psoriatic arthritis is and what’s being done to help improve the lives of folks living with this disease is Leah Howard at the National Psoriasis Foundation. It’s an organization that supports folks living with psoriatic arthritis. Welcome to the program Leah, how are you today?
Leah Howard: I’m wonderful, thank you for having me.
Neal: Thanks for joining us today. Well as I said, this month known for masks, Halloween right around the corner but what is it that some folks are masking? What types of feelings are folks dealing with who are living with this illness known as psoriatic arthritis or PsA?
Leah: Yeah, it’s a great question. As the Chief Operating Officer of the National Psoriasis Foundation which is the largest patient advocacy organization for individuals living with psoriatic arthritis, I’ve had the privilege to work with people living with psoriatic arthritis who really represent the full spectrum of the disease, from very mild to very severe. And we know that every individual’s journey is unique from their diagnosis to their symptoms, to their relationships with their healthcare provider. And chronic illnesses like psoriatic arthritis are both physically taxing as well as emotionally taxing and so in many cases, individuals living with the disease may not be showing the rest of the world just how much psoriatic arthritis impacts their quality of life, beyond the physical even to the emotional and social impacts.
Neal: We’re all familiar with arthritis, what is psoriatic arthritis and how does arthritis relate to psoriasis?
Leah: So psoriatic arthritis is an inflammatory form of arthritis which causes pain stiffness and swelling in and around the joints. You often see painful swelling in the fingers and toes and pain and stiffness in the neck and lower back. Psoriatic arthritis can develop at anytime but it most commonly appears between the ages of 30 and 50. So there’s about 8 million Americans living with psoriasis and up to 30% of those individuals may go on to develop psoriatic arthritis. So the the psoriasis that you may see on someone’s skin is really symptomatic of the systemic inflammation that they’re having and when that inflammation is in the joints, that’s psoriatic arthritis.
Neal: Now it’s not only affecting them in a physical way. What are some of the issues that the patients have to deal with and what are some of the issues that their healthcare providers are discovering that they’re dealing with while treating their patients?
Leah: Yeah, it’s a great question. So I’m really excited about a project that the National Psoriasis Foundation has underway right now with Pfizer on what’s called the PsA Narrative which is a global initiative really aimed at elevating the voice of the patient, raising awareness about the significant impact of psoriatic arthritis and as you said, acknowledging the important role of the patient physician communication. As part of that, we surveyed adults living with psoriatic arthritis and what we heard is that there’s really significant impact on quality of life of having this disease. So over nine in ten patients report that their psoriatic arthritis negatively impacts their emotional and mental well-being and in fact more than half say that their psoriatic arthritis even has a negative impact on their romantic relationships and intimacy.
Neal: Have you ever seen it manifest in someone say younger than that target group of sufferers that we mentioned early on in the conversation, say in adolescent or pre adolescents?
Leah: Yes. In fact, psoriatic arthritis can develop at any age so we do, the National Psoriasis Foundation does know at children and young adults that have psoriatic arthritis. And as you can imagine, there’s really significant social impacts for those individuals in particular. We hear from people living with the disease about the impact that it has on participating in sports and recreational activities and even their psoriatic arthritis stopping them from participating in social activities in general.
Neal: Well everyone who’s suffering from psoriatic arthritis has people in their lives – parents, loved ones, coaches, teachers – what are some what some of advice that you would offer us as non sufferers when it comes to dealing or being more sensitive with those who are dealing with the illness on a daily basis?
Leah: Yes, absolutely. So certainly for the person living with the disease, it’s important that they not feel alone. That they know that there are individuals that are there to support them, whether that’s other individuals living with the disease or even people that are very close to them in their life who we often call their care partner. So it’s critical that they are able to talk to them and open up to them about the symptoms that they’re having in the various ways in which their disease is impacting their quality of life. We we unfortunately hear that three in four people say that psoriatic arthritis negatively impacts their relationships with family and friends and certainly we don’t want that and an important part of addressing those impacts is getting on treatment and working with your provider to find a treatment that’s appropriate for you and that will really lessen both the physical as well as the other symptoms and impacts of your disease.
Neal: Are you aware of any other initiatives or efforts that Pfizer is involved into, say getting awareness out about the PsA or to educate patients and caregivers about the different options that may be Pfizer is involved in combatting or at least managing psoriatic arthritis?
Leah: Well I would encourage folks to visit the Pfizer PsA narrative website, that’s pfizer.com/news/press-kits/psa-narrative to learn more about this project and the various findings of this really important survey that was done.
Neal: Now just to be clear, not only people that are living with psoriatic arthritis but a lot of leading rheumatologists, dermatologists and other patient organizations are involved as well, is that correct?
Leah: That is correct, yes. And the National Psoriasis Foundation is honored to work with those folks that do treat individuals living with the disease and and provide education to both patients and providers to really support individuals getting on treatment and having this impact of their disease really decrease.
Neal: Leah Howard, thank you so much for joining us today, Chief Operating Officer at the National Psoriasis Foundation. Thank you so much.
Leah: Thank you for having me.
Neal: You’ve been listening the Health Professional Radio, I’m your host Neal Howard. Transcripts and audio of this program are available at hpr.fm and healthprofessionalradio.com.au. You can subscribe to this podcast on iTunes, listen in and download at SoundCloud and be sure and visit our Affiliates page at hpr.fm and healthprofessionalradio.com.au