Drew Griffin has been living with colorectal cancer for over eight years. In 2017, after his cancer had not responded to radiation and chemotherapy, and had metastasized, he decided to enroll in a clinical trial of the anti-PD-1 immunotherapy pembrolizumab (Keytruda®). Drew experienced minimal side effects during immunotherapy and was able to exercise, travel around Europe, and enjoy his life.
More recently, in June 2020, Drew enrolled in another immunotherapy clinical trial combining ipilimumab (Yervoy®) and nivolumab (Opdivo®). During the pandemic, Drew has taken extra precautions to socially distance, but has still been able to enjoy biking and advocating for causes he feels passionate about, including patient education.
We were thrilled to welcome Drew as a CRI ImmunoAdvocate this spring and his passion for increasing awareness around health disparities experienced by the LGBTQ+ community. We had an opportunity to speak with Drew about his current health care advocacy work.
CRI: Why do you feel it is important to share your story with other cancer patients, caregivers, and advocates?
Drew: Sharing your story is powerful because it is your lived experience. Through sharing stories, I believe that people can come to understand perspectives different from their own. This is how you change hearts and minds.
I am a gay man. I live my life open and proud as an LGBTQ+ activist. Since the earliest days of my cancer journey, starting in 2012, I have been open about my sexual identity with my health care team. This included campaigning for a marriage equality referendum while recovering from a lifesaving abdominal surgery in the hospital.
CRI: What are some of the challenges the LGBTQ+ community faces when seeking health care or health insurance?
Drew: Unfortunately, LGBTQ+ people have become conditioned to expect discrimination across all walks of life, and health care is no different.
There is fear of coming out to potentially unknowledgeable medical staff. Only 16 percent of LGBT patients choose to inform their doctor of their sexual orientation.
The patchwork of equity laws across the country allows for discrimination in health care and/or public accommodations. From uninformed doctors to outright legal denial of essential services, LGBTQ+ people are often confronted with overwhelming barriers to basic medical care. (See American Cancer Society LGBTQ Fact Sheet [pdf].)
Because of this, LGBTQ+ individuals have higher than average health disparities when compared to other groups, have less access to health care, and have experienced worse health outcomes in their mental and physical health.
CRI: How can we address or prevent barriers to cancer care within the LGBTQ+ community?
Drew: The number one barrier LGBTQ+ people face while trying to access health care is a lack of federal protections.
Most people do not expect to be denied health care, or to receive worse care, just because of who they are. And if they did, they would want to pursue legal remedies backed by state and federal law. This is not the case for many LGBTQ+ people in our country.
LGBTQ+ people are not considered equal citizens under federal law, and in many states can be legally discriminated against in regards to health care and insurance access, public accommodation, and lots of other issues that make receiving health care much more difficult and burdensome.
The Equality Act must be passed by congress to end these legal obstructions to health care. This bill would amend the Civil Rights Act to prohibit discrimination on the basis of sexual orientation and gender identity.
Medical students also need to be educated in LGBTQ+ cultural competency to understand the diverse experiences of LGBTQ+ people. Hospitals and medical facilities should provide welcoming environment to provide clues for LGBTQ+ patients that they are in a safe space. This can include customized intake forms to ensure use of preferred names and pronouns.
CRI: What is your relationship with your health care team and how did your health care team earn your trust?
Drew: I am lucky in that my relationship with my oncology team and support staff is awesome. I built trust with my health team by being direct and forward with them about what I expect, being engaged in my treatment planning, and also talking about my advocacy work so they can see I am a person with hopes, dreams, and desires. I am not just an “other.”
CRI: Once diagnosed with cancer, what are unique challenges LGBTQ+ people face?
Drew: The biggest challenge someone may face is deciding whether it is safe to come out to your oncologist and treatment team because depending on who that doctor is and what state you are in, among other factors, it could be a life or death decision.
Additionally, almost all cancer treatments affect sexual functioning. It can be challenging to have conversations about sexual health in the context of a conversation around cancer treatment with your health care team. Yet, it is absolutely essential to understand how treatment will impact your life.
Family support is crucial for cancer survivors. LGBTQ+ people create families in ways that are often invisible to or unwelcome in a health care setting. Health care providers could do a better job of welcoming and accommodating nontraditional families.
Support groups for cancer survivors and caregivers also pose extra challenges for LGBT people. They are nearly non-existent even in large cities.
CRI: How can family, friends, and allies be supportive?
Drew: The word ‘ally’ is a verb. It means taking action to support the community.
Here is a list of things you can do to be an ally in healthcare to LGBTQ+ people, created by PFLAG’s Straight for Equality national outreach and education program: 10 things you can do to be an Ally in Healthcare to Patients Who are LGBTQ+ [pdf].
CRI: What resources do you recommend for LGBTQ+ cancer patients?
Drew: My general recommendation is the National LGBT Cancer Network. It provides great information specifically for LGBTQ+ cancer patients as well as cancer professionals.
For emotional support, I recommend CancerCare’s support groups. There are excellent community forums on PFLAG. Finally, CRI’s Clinical Trial Finder is a good way to connect confidentially with a clinical trial navigator to learn more about immunotherapy trials for which you may be eligible.
READ DREW’S STORY IN THE IMMUNOCOMMUNITY
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