Image During this past year we’ve heard from patient groups about how the COVID-19 pandemic has upended the healthcare landscape for patients in the U.S.  We’ve learned about the struggles patients have had in accessing their medicines, securing doctors…

Hemophilia affects approximately 20,000 people in the United States. Although scientists spend their days studying the inner workings of the disease, what moves them most is hearing from patients and their families about how uncontrolled bleeding in the joints impacted their or their loved one…

  Today, more than 50% of all people living with HIV in the United States are over the age of 50. Ten years from now that percentage is estimated to go up to 70% and more than four in five people will have at least one age-related medical condition. “This is a reality we…

As the novel coronavirus continues to spread, scientists and researchers are working around the clock to identify diagnostics, therapeutics and vaccines to help protect individuals and communities across the globe. This week, leaders within the biopharmaceutical industry took to the airwaves,…

After 30-plus years working in Washington DC, it’s clear healthcare decision makers recognize that a patient’s story can add value to a discussion when data cannot. While the value of data is not disputed, the art of patient storytelling is seldom discussed.  I believe this is…

Representing all facets of the patient stakeholder community, participants in BIO’s eighth Patient and Health Advocacy Summit (#BIOSummit19) came together to proclaim: “I am BIO.” But as Dr. Julie Gerberding, executive vice president and chief patent officer at Merck and Co., who acted as the event…

For the FDA, engagement with patients, caregivers and patient advocacy organizations is a vital part of the drug development and review process. However, how that engagement happens can determine how successful it is. This was the key question addressed by the “Practices and Principles: Navigating…

When Mark Dant’s son Ryan was first diagnosed with MPS-I, a rare genetic disorder that leads to organ damage, he had to buy a medical dictionary in order to decipher the words the doctors were saying to him. “I didn’t understand the language of the scientists,” Dant recalled. “The key for every…

Transformative therapies are advancing like never before, and a new class of medicines are changing the way we treat the world’s most devastating and debilitating diseases. Yet while innovative biopharmaceutical companies are doing their part in developing lifesaving products for patients,…

Continued access to a stable treatment can make all the difference for patients with chronic illnesses like arthritis, cancer, diabetes, hepatitis C, HIV/AIDs and more.  Interruptions in treatment can lead to disease progression and unnecessary medical expenses like hospitalization or surgery…