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Leading with grit and grace: 3 women patient advocates on how to ensure patient advocacy success

J.P. Carroll
J.P. Carroll
March 26, 2021

While the health care and biotech community has largely focused on COVID-19 over the past year, the pandemic’s disproportionate impact on patients living with other diseases has highlighted the importance of continued investment in developing innovative medicines—especially for diseases like cancer and hard-to-treat rare diseases. In addition, COVID-19 has accelerated patient-centered practices that will be useful in developing new cures in the future—such as the decentralization of clinical trials, as just one example.

What’s the key to accelerating cures and ensuring patients are at the heart of the biotech industry’s work? Patient advocates.

In honor of Women’s History Month, BIO hosted a virtual event exclusively for the patient advocacy community featuring three inspiring women who founded and developed patient advocacy organizations:

They shared some words of wisdom about their inspirational journeys developing patient advocacy organizations that everyone in the sector—from patient advocates to the biopharmaceutical C-suite—can take with us as we move into the post-COVID world and continue our work to develop new breakthroughs.

Here are 4 takeaways for the industry and patient advocates to know.

1. “Where a woman lives shouldn’t determine whether she lives.”

That’s what the late Susan G. Komen told her sister, Ambassador Nancy Brinker, while being treated for breast cancer.

As she neared the end of her life—cut short at age 36 from the disease—Komen asked her sister to promise that they would find a cure for breast cancer. Since then, the Susan G. Komen Foundation has raised billions for breast cancer research, education, and screening.

2. Health care disparities “are growing and continuing to grow,” said Ambassador Brinker. Unfortunately, “for so many women, the diagnosis comes too late.”

Ambassador Brinker continues to work to bridge the gap caused by these disparities as the co-founder of The Promise Fund of Florida, to reduce the number of deaths due to late-stage breast and cervical cancer in Florida.

3. Have a clear mission. The National Alliance for Caregiving’s Gail Hunt offered advice for fledgling patient advocacy organizations. Make decisions “up front” about who you’re trying to reach. Ultimately, founders must “take the long view” when starting a patient advocacy organization and think about how its mission will be perceived in the future, keeping in mind that progress will happen in “incremental steps.”

4. Professionalize and seek opportunities to collaborate with existing organizations with similar goals. New, volunteer-led organizations should “professionalize” so donors know who is responsible for their dollars, said Virginia Ladd, who was diagnosed with Lupus at 23 and founded the American Autoimmune and Related Diseases Association (AARDA).

Most importantly, there was a resounding theme among panelists to never give up on your passion to help patients. This is important today now more than ever as the long-term effects of COVID-19 are not known, and it is likely that at this very moment, organizations are forming that will help COVID-19 survivors for many years to come. Keeping these tips in mind can ensure they are successful in their work on behalf of patients.