Colleen Connor is a member of the Board of Trustees of the Pulmonary Hypertension Association (PHA). She is a staunch and dedicated patient advocate and volunteer living with pulmonary arterial hypertension, a diagnosis she received in 2007. She is also a breast cancer survivor, and has served in numerous volunteer, fundraising, advocacy and support roles within both communities.
Ms. Connor has served on the ABIM Pulmonary Disease Board since July 2022.
How did you become a patient advocate? Why is that work important to you?
Actually, it came quite naturally when I became more comfortable and experienced with my diagnosis. I couldn’t possibly forget the distress my family and I shared when I was a newly diagnosed patient. I was desperate to learn all I could about pulmonary arterial hypertension (PAH) so that I might delay its progression and experience the best possible outcomes.
When I see a patient suffering, I can easily relate and want to support them. Early on, I felt an urgency to meet others, especially to seek out long-term survivors (those who at the time had survived seven or more years since diagnosis) and learn from them how I might best manage my condition, medications, side effects, energy level, etc., while raising our young family. Countless patient interactions boosted my practical knowledge and confidence to live the best life I could. I’ve been deeply grateful for the patient community (many whom have now passed) that took a personal interest in me and offered encouragement. I want to be that person and resource for others.
What has changed in the diagnosis and treatment of patients with PAH since your diagnosis? What needs to change?
First the good: I believe the best advancements have come in the way of new treatments, how we find qualified specialists, and the patient registry. As it relates to treatments, there have been remarkable advancements in PAH since 2007. Back then, I believe there were six treatments covering three pathways—today there are 14 treatments available, but they are for the same three pathways. What’s really exciting is where new and novel pathways are being explored! Studies are being published and there’s a new therapy we are anticipating approval for soon with very encouraging—maybe even groundbreaking—study results. In fact, my own physician, Darren B. Taichman, MD, Ph.D., wrote the editorial accompanying its publication.
Second, finding a specialist has become much less complicated. The Pulmonary Hypertension Association (PHA), with the support of the many brilliant and dedicated specialists who continually volunteer their time, developed a PHA-accredited PH Care Centers (PHCC) Program, where PH centers are evaluated and formally accredited. This initiative influences the sharing of best practices and elevating all centers capabilities. Today if a patient would like to know who is qualified, they can see if there is a center in their area. Coupled with this program is the PHA registry (PHAR) that now has over 2,000 patients enrolled and has been referenced in numerous research publications. Importantly, these two programs combined have metrics that prove they are fulfilling the mission of PHA to extend and improve the lives of those with pulmonary hypertension by reducing hospital stays and mortality, and improving overall outcomes.
As a patient and advocate, I believe the PH community has come a very long way since my diagnosis with these advancements. There is one area that continues to be a struggle, and that is time to diagnosis. These metrics have not improved. Many of our symptoms are identical to other more common diseases or conditions, so patients lose precious time (two and a half years on average) while cycling through appointments. Pulmonary hypertension is progressive, so the delay in diagnosis can lead to more advanced disease.
What about your work with the pulmonary hypertension community are you most proud of?
That is a hard one because there are programmatic activities that I believe are critical that impact future PH patients and then there are the personal connections, support and compassion our community shares.
From a programming perspective, my involvement as a board member for the Pulmonary Hypertension Association has enabled me to advocate for initiatives such as the PH Care Centers (PHCC) and PHAR. I believe these programs are the key to fulfilling PHA’s mission of extending and improving the lives of those with pulmonary hypertension.
I also co-lead a PHA support group. Every month, I facilitate a meeting for patients to either learn about important topics that could support them or meet for general discussion. We are a close group and we always leave uplifted, even though we have had to meet virtually since December 2019 due to the pandemic.
Generating awareness is an issue for rare diseases, and delayed diagnosis leads to more advanced disease. My family has worked hard to create awareness for pulmonary hypertension in my community through galas we hosted in 2013, 2015 and 2017; collectively we raised more than $600,000 for PHA and educated thousands through events and social media.
Advocacy is equally important. In 2010, I had the opportunity to meet with Sen. Bob Casey and Sen. Arlen Spector in Washington, D.C. That activity secured Mr. Casey as the first Senate sponsor of PH-specific legislation. I’ve met with other congressional members since and would encourage all patients to lean into supporting the needs of your disease community in this way. It can be as simple as sending an email. Every voice is important.
As someone who has lived not only with a rare pulmonary disease but with breast cancer, you have faced extraordinary challenges. What keeps you motivated? How does your experience help you support others?
During my worst health crises, I’ve been lifted up by my family, friends, medical care team and community. I’ve never had to walk alone.
I think it’s very important to help others—especially those newly diagnosed—to navigate this new life and support them so they can begin to courageously accept and find joy again while leaning into their “new normal.” I am grateful for the times I am feeling well and believe it’s important to use my time wisely and with purpose.
As a patient, what do you look for in a physician? How has that changed since your diagnosis?
Prior to my diagnosis, I was upset and embarrassed by physicians who dismissed my symptoms when I knew something was very wrong. That experience has left me trusting myself more. I know to keep moving forward and keep advocating for myself. Now, I carefully review a provider’s experience, certifications, and ratings instead of taking any “first available” appointment. It’s important for me that my specialists take the time to listen and allow me to engage in discussions about my care. I know I have choices.
What do you wish more physicians knew about pulmonary hypertension and caring for patients with PH?
In general, I just wish that more physicians knew about pulmonary hypertension as a rare disease—particularly those working in emergency rooms where patients with PH often end up. Many of us, myself included, have found ourselves in an ER where the staff knows very little (or nothing) about the condition and therapies, and that can lead them to making dangerous or life-threatening mistakes as they attempt to stabilize us. As patients, we must educate them on the pertinent items and tell them who to call (usually directly contacting our PH care team and facilitating that call ourselves), and after stabilizing us we are transferred to our own PH care center. I personally have been told, “Don’t take this the wrong way: you’re lovely, but I have no idea what to do with you so as soon as this other hospital can take you, we are transporting you there.”
I am passionate about all patients receiving the best care possible. My wish is that those physicians who are underqualified to treat pulmonary hypertension and do not follow best practices (e.g., not confirming the diagnosis with appropriate testing in order to pursue the appropriate therapies, exclusion of powerful therapies as options due to insufficient knowledge and capability in managing care involving continuous intravenous therapy, etc.) would simply refer their patients to experts. We need practicing PH physicians to follow the diagnostic process to get confirmation of the right diagnosis and initiate the correct treatment. I’ve met patients without ever having a right heart catheterization, given an incorrect treatment plan, and other patients not offered the gold standard therapy while failing on their current treatment. These instances have been devastating to witness, as well as the resulting patient outcomes.
On a separate note, my suspicion is that some pulmonologists and other physicians who are prescribing supplemental oxygen do not understand the difficulties patients encounter with durable medical providers/insurance and the oxygen reform that needs to take place. Supplemental oxygen should be patient-centric, and we need protections for access to liquid oxygen for patients that require it. I hope all pulmonary specialists will stay informed and advocate for important reforms to support patients when the opportunity presents itself. Coming soon, stay tuned!
What do you hope to achieve with the ABIM Pulmonary Disease Board?
I hope my fifteen years of personal experience and active engagement with countless patients in the pulmonary disease community can offer a diverse patient perspective on issues that require consideration in certification. As a patient, I see the continual advancements in research and technology changing the landscape of medicine (and life!), and I have a deep appreciation for all physicians that work to ensure they are remaining current with their certification, which I believe translates into patients receiving the highest quality care. It is an honor to serve on the ABIM Pulmonary Disease Board.
What do you most want physicians to understand about the Specialty Board’s work?
I’d like physicians to know that the topics and issues pertinent to certification are deliberately and carefully examined by all of us. The Specialty Board members represent a wide range of backgrounds and opinions, all with a focus and consideration on the impact of our work on patient care and ABIM diplomates. I also see the tremendous collaboration taking place between Specialty Boards and the medical societies.
I would like diplomates to know how respected they are and express my sincere appreciation for their efforts on behalf of the patient community to continue improving care.