The Orphan Drug Act at 40
Over 800 Approved Orphan Indications Since the 1983 Orphan Drug Act Passage
Four decades of Orphan Drug Act momentum amplifies the need for broader access to treatment of rare diseases, say NORD’s Karin Hoelzer and Fondation Ipsen’s James Levine.
Conquering Sickle Cell with CRISPR: Victoria Gray’s Story
Rare Disease Patient Embodies Remarkable Promise of Gene Therapy
As the first sickle cell patient treated with CRISPR, Victoria Gray moved from agonizing pain toward an astonishing cure. Ghanaian journalist Portia Gabor relishes telling stories like hers.
Family Caregivers Need More Support
Look At What Benefits Employers Are Providing
Journalists should help explain ‘the why’ behind the problems within caregiving, says The Wall Street Journal’s Clare Ansberry.
Reforming Nursing Homes is Priority, Says State Policy Expert
Look at States Like New Jersey and Ohio’s Nursing Home Reform Policy
Aging is a priority for the National Academy for State Health Policy, says Hemi Tewarson.
The Intersectionality of Long-Term Caregiving
Race and Ethnicity Have Affected Policy – and Long-Term Care Options
Black adults see inequity as they age due to the systemic history of racism, says Karyne Jones.
Covering the Consequences of Inaction
There’s No Guidebook to Long-Term Care, But Journalists Can Help
There are national systemic consequences within long-term care, Washington Post reporter Christopher Rowland says.
Addressing Equity in Long-Term Care
The Need for Supportive Services and Caregiving Options for Marginalized Communities
There’s a lack of options in long-term care and services, yet ‘choice is key,’ says Rita Choula of AARP and Joon Bang of Iona Senior Services.
Ai-Jen Poo: Caregiving ‘Became My Obsession’
Ai-Jen Poo of the National Domestic Workers Alliance Describes Experience with Grandparents
Unpaid family caregivers outnumber paid long-term workers tenfold, leading many to ask: Who's caring for the caregivers?
Caring for Parents: When Love Is Not Enough
The Demands Can Often Outweigh the Commitment to Loved Ones
Veteran NPR Producer Kitty Eisele could not prepare for the toll that caring for her father Al would take. Her podcast gives voice to the struggles that families face.
Caregiving Conundrum: Burden or Blessing?
Americans Want to Level Up as Caregivers-But They’re Flying Without a Net
Family caregivers face dire economic and health consequences from caring for loved ones, but many also find a sense of purpose or fulfillment, says Jason Resendez of National Alliance for Caregiving.
Lauren Miller Rogen Speaks Out on Mom’s Alzheimer’s
Why She and Husband Seth Rogen Founded Hilarity for Charity
Lauren Miller Rogen and James Keach hope their upcoming documentary will inspire and motivate millions of families coping with Alzheimer’s.
Long-Term Care Insurance, Costs Need Journalists’ Attention
Keeping Score on Progress and Policies to Support Caregiving
Washington Post’s Michelle Singletary and SCAN Foundation President Sarita Mohanty urge journalists to demystify caregiving costs.
Richard Lui Talks Caregiving In the Newsroom and In Our Families
‘Unconditional’ Film Shows ‘America in the Context of Caregiving,’ MSNBC’s Richard Lui Says
MSNBC’s Richard Lui and Alex Lo of NBC were caregivers for their own family members. Then, they made films about caregivers across the country.
Bracing for Impact: The Long-Term Care Crisis Unpacked
'Our System is Messed Up. Our Caregivers Are Overburdened.'
Americans need more support, say Debra Whitman and Susan Reinhard of AARP.
Dementia Caregivers Face Knowledge, Resource Gap
Caring for someone with dementia costs a family $80K a year, Sandeep Jauhar says
Dr. Sandeep Jauhar wrote “My Father’s Brain” about his family’s experience with Alzheimer's – including his own struggles as a caregiver.
‘Is My COVID Vaccine Covered?’ It Should Be.
The COVID Vaccine is Recommended by ACIP. Now What?
For updated COVID vaccine access, pharmacies will be where the “friction” is in the weeks ahead, doctor says.
Healing Children by Healing Communities
University Hospitals’ Program Fosters Strength in Fragile, Violence-Plagued Communities
Edward Barksdale knows how to mend a wounded heart. But the Surgeon-in-Chief at Rainbow Babies and Children’s Hospital also vows to heal traumatized communities.
Real Talk About Why American Children Are Obese
Viewing the Root Causes through a Public Health Lens
Childhood obesity can be treated, but the social determinants of health hold more sway than surgery or nixing sugary soda, says the Cleveland Clinic’s Dr. Roy Kim.
Covering Health Care for Undocumented Families
Health Care for Child Immigrants is Safe For Now, Experts Say
Undocumented parents often don’t seek health care for fear of deportation. Journalists can help kids stay covered, experts from the Children’s Defense Fund Texas said.
As Workplace Mental Health Worsens, Some Companies Step Up
Need a Mental Health Day?
Toxic bosses, burnout, turnover and unionization prompt new emphasis on workplace well-being.
How Will Intellectual Property Affect COVID Inequity?
The Debate Raises Questions of Ethics, Nationalism and Innovation
The WTO compromise on a Trade-Related Aspects of Intellectual Property Rights (TRIPS) waiver has not settled the debate.
Does Poverty Affect Human Epigenetics?
Or Vice Versa?
While TikTok videos about epigenetics and trauma rack up millions of likes, the science continues to evolve.
Reporting on Kids and the COVID Vaccine
Cutting Through Misinformation
Tips for reporters covering the coronavirus vaccine for children — and how it will impact families, schools and more.
AI Driving Breakthroughs on Rare Diseases
Deep Learning, Genomics Spur Advances in Understanding and Hope for Treatment
But journalists should also focus on regulation of the AI and electronic medical records that underlie biotech gains.
Governments Spur Rare Disease Treatments
US and EU Laws Have Led to Rare Disease Gains
In the U.S., the Orphan Drug Act incentivizes drugmakers to develop drugs for rare disease patients, including 31 in 2020.
Rare Diseases: A Global Challenge
When Each Nation Has Few Cases of Each Disease, Collaboration Is Key
From Ghana to Australia, rare disease researchers and patient groups prod their governments to action — and international cooperation.
Covering Rare Diseases with Sensitivity (for fellows)
Nearly 8% of the world’s population — 350 million people — have a rare disease. But diagnosis and treatment are advancing.
Rare Diseases: Small Numbers, Big Problem
They Escape Notice, but ‘Rare’ Diseases Are Anything But
Nearly 8% of the world’s population — 350 million people — have a rare disease. But diagnosis and treatment are advancing.
Real-World Evidence is Changing Medicine
Journalists Need to Understand Uses and Shortcomings
As the FDA allows more big data for drug and device approvals, top researchers share studies that show its potential — and flaws. One drug-safety expert warns against abandoning the randomized controlled trial.
Vaccine Passports: Ethics and Inequality
Pro Tip: Call them “immunization credentials,” experts advise
Some experts call for U.S. digital credential to prove vaccine status, but others warn it could increase inequality and discrimination.
Real-World Evidence: How Big Data is Changing Scientific Standards
How Should the FDA – and Journalists – Decide What Scientific Evidence Is Good Enough?
Randomized clinical trials have long been the gold standard for drug and device approvals. Now Big Data powers “real-world evidence” that plays a growing role in medical decisions and FDA approvals.
Two New Tools for Reporting on Vaccine Access and Information Needs
They Might Not Tell Their Boss or Doctor, But People Confide in Google.
Google and public health officials have developed tools reporters can use to pinpoint “vaccine deserts” and communities where people are searching about vaccine side effects.
Addiction Medicines Under Development
Advances in Neuroscience Power New Treatments of Opioid Abuse Disorders
Three new types of addiction-treatment drugs show promise, as researchers apply understanding of cancer, Alzheimer’s disease, epigenetics and anxiety to developing medicines that can lessen cravings and relapses.
Writing About Opioids
Authors Share Insights on America’s Opioids Crisis and How to Cover It
Opioids changed the geography and politics of America’s addition problem. Here’s how three writers made readers care about the story.
Addiction in Immigrant and Latino Populations
Language a Barrier to Reaching Latino Populations for Mental Health Services
Immigrant Latinos are healthier, physically and mentally, when they arrive in the U.S. than later, research finds A dearth of Latino health-care professionals hurts.
Digital Therapies for Drug Addiction
Research Shows Apps and Other Tools Can Beat Standard Addiction Treatment
Physicians won’t be replaced by iPhones, but “a therapist in your pocket” can help improve treatment for substance use disorders.
Race and the Criminalization of Drugs
America Treated Addiction as Medical Problem – Until People of Color Were Addicted
Experts decry systemic racism in the treatment of opioid addiction. More Black patients have to line up to get methadone. White Americans are more likely to get buprenorphine prescribed from the privacy of a doctor’s office.
New Insights into Alcohol Use Disorder
Alcohol Use Varies Widely, But Only About 20% Get Addicted. What Are the Drivers?
A family history of alcohol use disorder is the most important risk factor. A top addiction doctor details the latest research.
The Fentanyl Surge
As Heroin and OxyContin Fade, Powerful and Cheap Fentanyl Kills 30,000 Per Year
Just when the U.S. began winning the war on prescription opioid misuse, synthetic fentanyl smuggled from China and Mexico has created an “unprecedented” increase in overdose deaths.
Systemic Racism and Addiction Medicine
Tackling the Racism That Has Long Plagued Addiction Treatment (See: George Floyd)
Addiction specialist Dr. Stephen Taylor has been calling for sweeping reforms in the racialized treatment of substance use disorders. He calls on physicians and law enforcement to rethink a chronic, relapsing brain disorder.
