In this enlightening conversation, President and CEO Liz Helms joins host Adrienne Shapiro of Axis Advocacy to discuss healthcare and addressing gaps in care. The duo give a history on their journey into advocacy, with Liz sharing how her own denial for a needed surgery motivated her to stand up, fight back, and make a difference. Around the time Adrienne started her journey advocating on behalf of her daughter who was diagnosed with sickle cell disease, she met Liz and realized that despite the difference in disease focus, we are united in the challenges (and triumphs) of chronic disease management.  

It all started with a story – and as Liz reminds us, “Many voices come together when one voice stands up”. This is why it is critical that patients and their caregivers know the value of their story and personal experiences and speak out against barriers to care. Doing so may very well be the difference between being denied and getting appropriate, affordable care while ensuring that no other patient shall go through such difficulties. Such is the case with sickle cell disease treatment progress, which now has a powerful voice in policy and possible cures available.

So what is a fundamental fix to the broken healthcare system? Beyond the crucial focus on eliminating barriers like step therapy, non-medical switching and others, Liz says comprehensive medication management could serve as a novel, key approach that represents the paradigm shift in medicine.

And where do we go from here? We need continued innovation, evidenced by the incredible leaps in treatment of sickle cell disease which underscore the value of the pursuit of improving care and outcomes. The pair discusses how collaboration and investment in researching the latest biomedical technologies enabled the creation and production of vaccines to battle COVID-19 in a relatively short time span. While the research was not novel and no corners were cut, some individuals may be hesitant to get a COVID-19 vaccine. Liz welcomes listeners to check out YourVaccinationGuide.org, a project of the California Chronic Care Coalition, Healthcare Leadership Council, and other partners including Axis Advocacy, for a one-stop shop for answers to questions the public has been asking regarding the COVID-19 and other vaccines.

The team brings it back to the power of speaking up and sharing your story and just how impactful your voice can be in making a difference. If you have a story you would like to share, please visit MyPatientRights.org.