“I need to breathe” — Living with Asthma: Patient Experiences, Old Challenges, New Drugs

"I need to breathe" — Living with Asthma: Patient Experiences, Old Challenges, New Drugs By Kathleen Hoffman, PhD MSPH Earlier this month, the American Lung Association (ALA), Inspire’s partner for the “Living with Asthma” online community, announced that it is looking for patient panelists to participate in a PFDD (Patient-Focused Drug Development) meeting on Pediatric Asthma, to be held virtually on 9/20/2021. “The meeting will consist of an overview of pediatric asthma, an explanation of the Food and Drug Administration’s PFDD meeting process, and two panel sessions,” explained Annette Eyer, the ALA’s National Assistant Vice President [...]

Out of Nowhere: Kidney Cancer

Out of Nowhere: Kidney Cancer By Kathleen Hoffman, PhD MSPH Of the estimated 1.9 million cancers diagnosed each year in the US, around 4 percent are kidney cancers, the most common are renal cell carcinomas (RCC). Around 76,000 new cases will occur in the US in 2021, 48,0000 in men and 27,000 in women. Kidney cancer can occur at any age, but is most likely to be diagnosed between the ages of 55 - 75.1,2,3 Out of the Blue Patients and caregivers describe sudden and unexpected diagnoses of kidney cancer: My husband was just newly diagnosed [...]

The Kidney Cancer Support Community on Inspire

The Kidney Cancer Support Community on Inspire By Kathleen Hoffman, PhD MSPH Of the over 1 million cancers diagnosed each year in the US, around 3 percent are kidney cancers.1 This relatively rare cancer is twice as likely to develop in men as women. Around 73,000 new cases will occur in the US in 2019, about 44,000 men and 29,000 women.2 Kidney Cancer Association Kidney Cancer Support Community on Inspire Started in 2014, the Kidney Cancer Association Kidney Cancer Support Community on Inspire has grown to approximately 2600 members; 64 percent are female, 36 percent male. [...]

Genetic testing: What patients and caregivers understand and value

Genetic testing: What patients and caregivers understand and value By Richard Tsai There’s been an explosion of information about genes, genetics and genomics since completion of the Human Genome Project in April 2003. Stories about remissions achieved through pharmacogenomics and immunotherapy and disease risk factors identified through genetic testing fill both online and offline media. Today, direct-to-consumer (DTC) genetic testing companies--which make kits available at between $100 and $200-- have huge databases of genetic information. In fact, even if you have never used a kit, you may be able to be identified through these databases if [...]

First Breast Cancer “Durable Regression” with Immunotherapy: Judy Perkins, Inspire member

First Breast Cancer “Durable Regression” with Immunotherapy: Judy Perkins, Inspire member By Kathleen Hoffman, PhD MSPH On June 4, 2015, Holly Kitchen, a young mom with metastatic breast cancer, published a video that received over 46 million views in one week. Its message? “Metastatic breast cancer has no cure.”1 Exactly three years to the day, the National Institutes of Health announced that someone with metastatic breast cancer has been cured.2 Here’s her story. Judy Perkins joined the Advanced Breast Cancer Support Community on Inspire in August 2013, shortly after her diagnosis with metastatic breast cancer. But her [...]

Inspire posts forward medical research in adverse drug reactions, new study shows

Inspire posts forward medical research in adverse drug reactions, new study shows Over 2 million injuries, hospitalizations and deaths in the US each year are associated with post-approval adverse drug reactions (ADRs).1 The usual method of gathering ADR data is through provider reporting.  Research suggests that health care providers tend to under-report ADRs, sometimes because patients just don’t discuss all of their treatment experiences with them.2 Supplementing spontaneous provider-reliant reporting could be extremely beneficial to patient safety. In Can Patient-Generated Health Communication on the Internet Enhance Pharmacovigilance? (Part 1)3 and Research Confirms: Valuable Patient-Centered Data on Inspire [...]

What Do Patients and Caregivers Know about Immunotherapy?

What Do Patients and Caregivers Know about Immunotherapy? Inspire’s Immunotherapy Awareness and Perceptions Survey According to a 2012 study, patient activation means “having the knowledge, skills, and confidence to manage one’s health.”  The study confirmed that better health outcomes are typically associated with greater patient knowledge and activation.1  As the field of oncology continues to embrace personalized medicine with immuno-oncology and immunotherapy, patient activation is essential. Today, in a world with content flooding every single channel and device we own, consumers are either over-informed, or under-informed.  A wide range of information sources, ranging from news outlets to [...]