US healthcare

Judith Heumann, activist who led US disability rights movement, dies aged 75‘Trailblazer’ fought for civil rights protections at a time when people with disabilities were treated like second-class citizensThe savvy, wheelchair-using civil rights activist Judith Heumann, who led a movement to reimagine what it means to be disabled in the US, died on Saturday at a hospital in Washington DC.Heumann had been hospitalized for a week dealing with heart issues that may have stemmed from her lifelong challenge with polio, the Associated Press reported. She was 75.People across the country, from past and present politicians and presidential figures to civil rights activists, mourned Heumann’s sudden death over the weekend. Joe Biden described her as a “trailblazer” and a “rolling warrior” whose “fierce advocacy” led to landmark civil rights legislation – the president singled out the Americans with Disabilities Act, which protects people with disabilities from discrimination.Heumann, who founded the Independent Living Movement, was perhaps most recognized in recent years from her appearance in the documentary Crip Camp: A Disability Revolution, which chronicled the forgotten history of a freewheeling summer camp called Camp Jened in upstate New York for teenagers with disabilities in the 1970s.Heumann, who was born in Philadelphia in 1947 and raised in New York, contracted polio in 1949. When her mother tried to enroll her in kindergarten at a local public school, Heumann was denied entry because she was unable to walk. The principal at the time told Heumann’s mother, Ilse Heumann, that letting her attend school in a wheelchair would create a “fire hazard”. She was instead given home instruction twice a week.After Ilse challenged those restrictions, Judy was eventually allowed to enter the building.She attended Camp Jened at the age of eight and eventually became a counselor there. She continued to face the stigma and exclusionary practices surrounding her disability. As an adult, she had been denied a teaching license in New York, despite passing her exams. After she sued the city’s board of education, she became the state’s first wheelchair-using teacher.Her experience at Camp Jened inspired a groundswell of US political activism and sparked a movement of young activists with disabilities who fought for civil rights protections at a time when they were treated like second-class citizens.In a 2020 film review from when Crip Camp was released, the Guardian described her as a “captivating central figure, persuasively, passionately petitioning for equity” who refused to settle in the pursuit of broader rights even as Congress passed legislation.As an adult, Heumann – who co-founded Disabled in Action, an activist group born out of that experience at Camp Jened – notably led a sit-in that went for 28 days at a federal building to protest the US Secretary of Health, Education and Welfare’s refusal to implement regulations from a section of the 1973 Rehabilitation Act. It was the longest sit-in at a federal building in US history.Her youngest brother Rick Heumann told the Associated Press that her lifelong activism had not been about seeking glory but was “always about how could she make things better for other people”.On Twitter, former president Barack Obama, who was co-executive producer of Crip Camp along with former first lady Michelle Obama, said Heumann “dedicated her life to the fight for civil rights”.The health justice activist Ady Barkan, who serves as co-executive director of Be a Hero and moves with the help of a wheelchair while fighting amyotrophic lateral sclerosis, described Heumann on Twitter as “warm and witty and full of life, as always”. Barkan added: “What a privilege it was to meet her and what a gift it is to roll in the tracks she carved. Thank you Judy. Rest in power.”Shantha Rau Barriga, disability rights director at Human Rights Watch, said in a statement Heumann was a “true force of nature”.“She was a giant in the human rights movement and led with such integrity,” she added. “This loss will be felt far and wide but what a legacy she leaves behind.”“Beyond all of the policymaking and legal battles that she helped win and fight, she really helped make it possible for disability to not be a bad thing, to make it OK to be disabled in the world and not be regarded as a person who needs to be in a separate, special place,” the president and CEO of the American Association of People with Disabilities, Maria Town, told the Hollywood Reporter.In Crip Camp, Heumann said that she wanted to see “feisty disabled people change the world”. Back in 2021, she told PBS News Hour that decades after the height of her activism, she had seen the country shift toward recognizing the need to address “race and gender, equality, and disability as issues”.“Disability only becomes a tragedy when society fails to provide the things we need to lead our lives – job opportunities or barrier-free buildings, for example,” she once said. “It is not a tragedy to me that I’m living in a wheelchair.”TopicsUS newsUS politicsUS healthcarenewsReuse this content More

Inflation Reduction Act will be ‘life-changing’ for Black and Latino seniorsMillions of Americans could benefit from provisions in the bill that reduce prescription drug costs, experts say Millions of older American could benefit from provisions in the new climate and healthcare spending package that lower prescription drug costs. For Black and Latino seniors, who disproportionately suffer from chronic diseases and struggle with high costs, the package, if passed and signed by Joe Biden, could be especially life-changing.The Inflation Reduction Act, which the US House is expected to pass on Friday, would give Medicare the power to negotiate prices with pharmaceutical companies for up to 10 drugs starting in 2026. But other provisions could make the annual out-of-pocket costs for US seniors more affordable, which could disproportionately help low-income Americans and Black and Latino seniors on Medicare, who are up to twice as likely to struggle with paying for medication as white Americans.“This is a population that’s more likely to live with certain diseases that are often treated with expensive medications. It’s also a population with relatively limited income and assets,” says Tricia Neuman, executive director of the Kaiser Family Foundation’s Program on Medicare Policy. “It’s a double whammy that makes Black and Latino beneficiaries more vulnerable but also puts them in a place where they’re likely to be helped by the provisions.”The legislative package, lauded for its sweeping $369bn investment toward addressing climate change, would include a $2,000 annual cap on drug costs for seniors and a monthly cap of $35 for insulin. The spending bill would also eliminate the cost of vaccines for seniors and a three-year extension of federal subsidies for lower-income Americans who buy private insurance through the Affordable Care Act, helping up to 15 million Americans.“When a patient has several different conditions that they come into the office to see us with, $2,000 can be what they pay for a month for their medications, $2,000 can be what some patients pay for for a single prescription,” Utibe Essien, an associate professor of medicine at the University of Pittsburgh who has studied prescription drug inequity, said. “To limit that to the annual cost of prescriptions is going to be life-changing for a lot of patients and their families.”While the healthcare provisions will impact older Americans on Medicare nationwide, the reality is that the burden of high prescription drug costs falls unevenly on Black and Latino Americans, who are more likely to work in lower-paying jobs with fewer retirement benefits, earn less income and hold less savings than their white peers. At the same time, in a country where people pay more than twice as much for prescription drugs as other countries, Black and Latino Medicare beneficiaries “are more likely to report being in relatively poor health, have higher prevalence rates of some chronic conditions, such as hypertension and diabetes than white beneficiaries”, according to a Kaiser Family Foundation analysis in 2021.The combination of disparate suffering and the struggle to afford the significant costs to address that suffering, in turn, forces Black and Latino seniors into a devastating dilemma.KFF researchers found that the median income per capita for white seniors on Medicare was double that of Latinos and one and a half times that of Black Americans. What’s more, researchers found that white Medicare beneficiaries overall held a median savings per capita of more than $117,000, more than eight times that of Black beneficiaries and a staggering 12 times that of Latinos.Under the bill, a $2,000 annual cap on out-of-pocket drug expenses would go into effect in 2025. Currently, in an environment where there is no limit on costs, 1.4 million seniors on Medicare spent more than $2,000 on prescription drug costs in 2020, according to the Kaiser Family Foundation.What’s more, the monthly cap on insulin, which goes into effect next year, would aid the more than 3 million Medicare beneficiaries who use insulin. But the disparities go beyond: nearly half of Black and Latino seniors on Medicare reported having diabetes, compared to less than a third of white beneficiaries. And while more than 3 million seniors covered by Medicare struggled to afford medications in 2019, Black and Latino seniors were nearly twice as likely to report not getting their necessary prescriptions because of costs than white seniors.Essien says that the bill will reduce the costs that drive health disparities among seniors. Yet, for some provisions, its true impact may not be felt for years: Medicare negotiation of drug prices, for instance, fully goes into effect in 2026 and will be limited to 10 drugs to start. What’s more, the cap on monthly insulin costs leaves out those who are covered by private insurance.Though the bill focuses on reducing healthcare costs, it fails to address the underlying causes of racial health disparities such as people’s unequal access to pharmaceutical care and the biases Black and Latino patients face within the medical system. Essien hopes the savings from drug costs in the bill would “allow us to start to address some of these fundamental root causes of health inequities in our country”.“We must applaud this bill because it is going to reduce costs of drugs for millions of Americans each year, specifically for older Americans,” he says. “Why these disparities exist is what we have to get to the bottom of. A bill that reduces medication costs isn’t necessarily alone going to address that.”TopicsUS politicsUS healthcarenewsReuse this content More