A Burden Shared: Finding Support for Major Depressive Disorder

A Burden Shared: Finding Support for Major Depressive Disorder By Kathleen Hoffman, PhD, MSPH The CDC reported in March that the number of people in the US experiencing recent symptoms of an anxiety or depressive disorder increased from 36.4% to 41.5% during the pandemic.1 Given the circumstances, this 5% uptick in people reporting mental distress isn’t surprising. What should catch our attention, however, is that over 1/3 of the population described having experiences that qualify as symptomatic of a disorder even before the pandemic. The World Health Organization considers depression a global problem affecting over 264 million [...]

Familial Amyloidosis: “So Rare You’ll Never See Anyone With It”

Familial Amyloidosis: "So Rare You’ll Never See Anyone With It" By Kathleen Hoffman, PhD, MSPH Until recently, the only treatments for a rare disease called familial amyloidosis were symptom management or a liver transplant. Not only is the disease inherited, genetic, and rare, its incidence varies widely by region: The NIH says it occurs in about 1 in 583 people in some parts of Portugal, compared to about 1 in 100,000 people in the US. Inspire members say that the path to diagnosis and treatment is long and convoluted: I was diagnosed with familial TTR Amyloidosis about [...]

Social Media Communities: Blazing a Trail to New Cures

Social Media Communities: Blazing a Trail to New Cures By Kathleen Hoffman, PhD, MSPH The press makes big news of misinformation spread on social media, but two virtual conferences last week -- Patients as Partners USA and Collaboration for Outcomes using Social Media in Oncology (COSMO) -- featured speakers who became patient advocates for their diseases after participating in social media discussion groups. These speakers found and now share valid information in health communities online, and demonstrate, yet again, how participation in social media has expanded scientific knowledge and research. The Patients as Partners USA conference, a [...]

Heart to Heart Talks: Inspire Members and Heart Disease

Heart to Heart Talks: Inspire Members and Heart Disease By Kathleen Hoffman, PhD, MSPH Heart disease is the leading cause of death in the US among men and women, and for most racial and ethnic groups. Responsible for one in four deaths every year, more people die of heart disease than they do of cancer.1 “Heart disease” is a general category, but the most common kind of heart disease in the US, coronary artery disease (CAD), accounts for over half of the fatalities. CAD killed 365,914 people in 2017. Twenty percent of those who die of CAD [...]

The Race to Rescue Livers: Finding Treatments for NASH

The Race to Rescue Livers: Finding Treatments for NASH By Kathleen Hoffman, PhD, MSPH There is a race to develop drugs to treat non-alcoholic steatohepatitis, commonly called NASH. NASH, an aggressive form of liver disease causing inflammation and scarring, already affects 3-12% of the entire US population.1,2 What’s the incentive? There’s currently no approved treatment, and it can be fatal.3 The current standard of care is lifestyle changes. NASH is a more serious form of NAFLD (non-alcoholic fatty liver disease) and can result in cirrhosis.4 Related to obesity and diabetes, but not to alcohol consumption, NAFLD already [...]

A Surprise Diagnosis: Chronic Kidney Disease

A Surprise Diagnosis: Chronic Kidney Disease By Kathleen Hoffman, PhD, MSPH March is National Kidney Month, when communities across the country work to raise awareness about kidney disease. Not too worried? You might want to check: The CDC estimates that 15% of adults are estimated to have Chronic Kidney Disease (CKD). That’s 37 million people in the US alone. Even worse: Most (9 in 10) adults with CKD  do not know they have it.  You can be unaware even if you’re in serious danger of kidney failure. One in 2 people with very low kidney function who [...]

Trying To Find More Answers About Tuberous Sclerosis Complex

Trying To Find More Answers About Tuberous Sclerosis Complex By Kathleen Hoffman, PhD, MSPH Tuberous Sclerosis Complex (TSC) is a “rare” genetic disease: According to the Tuberous Sclerosis Alliance, Inspire’s community partner, “At least two children born each day will have tuberous sclerosis complex.”1 Classifying a disease that affects a million people worldwide as “rare” doesn’t comfort patients with TSC. Created by mutations in one or two genes, TSC1 and TSC2, its manifestations vary widely depending on the nature of the mutation, which is why it is called “tuberous sclerosis complex.” It’s a complex genetic disorder. It [...]

Customer Loyalty and Service Insights for the Pharmaceutical Industry

Customer Loyalty and Service Insights for the Pharmaceutical Industry By Dana Deighton “Only nine percent of U.S. consumers believe pharmaceutical and biotechnology companies put patients over profits.” This sentiment, found in the 2016 Harris Poll of Reputation Equity and Risk Across the Health Care Sector, has stayed fairly consistent in Harris polls until recently.1 In this year’s April and May series of surveys around the COVID-19 pandemic, Harris asked the question, “How has your view of [the Pharmaceutical Industry] changed since the start of the coronavirus pandemic?” In both the polls, 40% of respondents had a more [...]

Implementing patient centricity?

Implementing patient centricity? By Monica St. Claire Over 1,000 employees from bio-pharmaceutical, medical device and associated supplier companies responded to the Aurora Project’s recent Patient-Centric Benchmarks Survey. Of those respondents, 91% said patient centricity is important, a 6% increase from 2016. But only 30% believe the industry can make it a reality. Knowing how to be patient centric seems to be the missing ingredient. Only 22% of respondents agreed with this statement, “We know exactly what and how to teach [patient centricity] to our people.”1 While many articles call patient centricity a “mantra” and “cliché,”2 Inspire [...]

Can the Life Science Industry Be Part of Shared Medical Decision-Making?

Can the Life Science Industry Be Part of Shared Medical Decision-Making? By Richard Tsai In the past, if there was something wrong, most patients went to the doctor and did what their doctors told them to do. Now, the plethora of available online health information has transformed the dynamic between patients and their doctors.  According to Pew Research Center’s 2013 data, 59% of Americans search for health information online. In 2015 Google found that one in twenty online searches were health-related.1 Armed with information about diagnoses and treatments, patients can change the medical decision-making process. Inspire’s 3rd [...]