Week in Review: The Importance of Patient Perspectives

Week in Review: The Importance of Patient Perspectives

06.20.14 | By

“The biopharmaceutical industry’s top priority is to provide patients with access to innovative, life-saving medicines.”

This week, our President and CEO John J. Castellani shared this thought in an opinion piece that appeared in Morning Consult. He discussed the lack of coverage and access for patients with health insurance exchange (HIX) plans. His words could not be closer to the truth as we continue to focus on the importance of our nation’s patients and the treatments that help them live longer, healthier lives.

Patients remain at the epicenter of biopharmaceutical innovation, and their feedback during the research and development process (R&D) is critical. On Wednesday, Michele Lloyd-Puryear of the Genetic Alliance discussed key findings from a patient-driven data collection on sickle cell disease in collaboration with PhRMA and four community-based organizations. Using the Genetic Alliance’s Platform for Engaging Everyone Responsibly (PEER), more than 120 individuals across the country volunteered information on how the disease, as well as different treatment options, affected them on a daily basis. The data, in combination with other clinical trial results, allow for a more patient-focused, expedited treatment development process tailored to each patient’s needs. The PEER survey and thousands of clinical trials are still being conducted across the country in which patients can participate or share their stories.

Patient feedback is essential to the pipeline, which is why PhRMA has partnered with six organizations to convene a Dialogue Series aimed to increase and improve patient-reported outcome (PRO) tools. Like PEER, PRO is another way to obtain feedback and provide important insights into developing treatments for specific disease states. The series will reconvene later this summer to discuss how to advance PRO can further shape the innovation pipeline for patients. With their help, we can build a strong, thriving pipeline aimed to efficiently and effectively deliver needed treatments.

As innovative new treatments increase life expectancy, the risk of developing chronic diseases for seniors also continues to rise. In the newly released new Medicines in Development report on treatments for top chronic diseases affecting older Americans, we highlighted the more than 430 medicines currently making their way through the pipeline to tackle diseases such as Alzheimer’s, heart disease and diabetes. To continue to learn more about promoting health for seniors, our Conversations forum asked experts to weigh-in on how we can tackle aging as a major risk factor for chronic disease. Read the responses and contribute to the conversation here.

While continuing to focus our efforts on incorporating the patient perspective on various issue areas, it is equally important to keep patients informed of new developments or roadblocks to accessing their medicines. As we have mentioned, health insurance plans often restrict access to needed treatments due to high out-of-pocket costs and deductibles. In order to further educate individuals on how they may be affected, we created state fact sheets on health insurance exchange coverage and access to prescription medicines across the country.

We always want to hear from you, so be sure to follow us on Facebook and Twitter and continue to share your thoughts with us. Together we can improve patient lives and advance medical innovation. 


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