The PF world is an inclusive community, as it should be

The pulmonary fibrosis (PF) community is made up of people from all walks of life. This disease does not discriminate at any level. Your skin color, religious preference, gender identity, sexual orientation, ethnic background, or the size of your bank account is not a factor known to contribute to a diagnosis of pulmonary fibrosis.

And we’re working toward a common goal, aren’t we?

When I was diagnosed with idiopathic pulmonary fibrosis in January 2017, a whole new world opened up to me. I recall sitting in the waiting room of the clinic on the day I was diagnosed. The people there were a cross section of the world and society. I could almost pick out those new to the disease arena and those who’ve been visiting the clinic for some time.

PF and other rare diseases do not take your sexual orientation or gender identity into account. I wanted to highlight the nondiscriminatory nature of PF during June, which is Pride Month. It’s when we recognize and open ourselves to not just the achievements of the LGBTQIA+ community, but also the challenges faced by its members.

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A community within the PF community

The acronym LGBTQIA+ represents lesbian, gay, bisexual, transgender, queer or questioning, intersex, and asexual. The “+” sign recognizes anyone not specifically identified in the acronym but who identifies as a part of the community.

According to EveryLife Foundation for Rare Diseases:

“People who are affected by a rare disease and belong to additional marginalized communities are more likely to experience increased and more complex stigmatization due to the intersectionality of their identities. This holds true for the LGBTQIA+ population who may lack access to safe spaces, involvement in policy and legislative efforts, and opportunities to participate in advocacy events. As a result, there is limited data, awareness, and proposed policy solutions that could be used to remove barriers, address gaps, and improve the lives of diverse rare disease patients.”

The LGBTQIA+ community is marginalized in healthcare. In my view, that situation has improved over the years, but the personal safety concerns of some members of this community contribute to a delay in diagnosis, for instance.

Welcome, LGBTQIA+ organ donors

When I received my bilateral lung transplant in July 2021, I wasn’t told anything about my donor. Even today, I have no information about this person. I can tell you that my care team told me the lungs were healthy, and I didn’t even consider whether the donor was a member of the LGBTQIA+ community. In the absence of a medical reason not to use the donor lungs, I didn’t care about the sexual orientation of my donor.

Members of the LGBTQIA+ community are eligible to be organ donors. With some exceptions, the community is encouraged to become registered organ donors.

I do realize this column may make some people uncomfortable. To me, it’s important to find more ways to reach underserved communities, including the LGBTQIA+ population, to ensure they understand the signs of this disease so each marginalized person can seek treatment. Their identities shouldn’t affect the quality of care they receive when they seek help.

Encouraging members of the community to sign up to be organ donors during Pride Month is an opportunity to reach them at Pride events around the country. Each time anyone signs on to donate, their opportunity to touch others is priceless.

I’m a straight male with friends in different segments of the LGBTQIA+ community. I’m an ally. Ensuring that all segments of the community receive proper care and know the value they bring to organ donation is how I can make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.