Up to 90 percent of people with Down syndrome develop Alzheimer’s disease, usually in their early 50s but sometimes in their 40s. Yet, they are almost never included in clinical trials for drugs to treat or prevent Alzheimer’s.
Carli Binek is participating in a study tracking biological changes in the brains and bodies of adults with Down syndrome to identify the biomarkers that might herald the onset of Alzheimer’s disease. Karen Gaffney is not afraid of challenges. Born with bum hips, she became an accomplished swimmer, crossing Lake Tahoe solo and the English Channel as part of a relay team. She started a foundation to champion people with disabilities, giving motivational speeches.
over a controversial Alzheimer’s drug called Aduhelm that might not even work and can cause significant safety problems.follow through Individuals with Down syndrome are rarely enrolled in clinical trials for Alzheimer's disease. Advocates like Karen Gaffney are pushing to change that. People with Down syndrome used to die too young to develop Alzheimer’s. In the 1980s, their life expectancy was 30. Today, it is twice that, reflecting improved medical care for congenital heart problems and other conditions. But in a gut-wrenching irony, longer lives mean aging parents are watching middle-aged children descend into dementia.
In other cases, parents who have spent their lives fighting to give their children opportunities face an agonizing question: Will their middle-aged child with Down syndrome develop dementia and need specialized care just as the parents are entering their 70s or 80s? Friends who have lost middle-aged children to Alzheimer’s are urging the Nothnagles to move Jay into a group home or other setting that could provide more help if he needs it. Jay is opposed, and his parents don’t want to curb his hard-earned independence.
While some people applauded Medicare for “correcting” an FDA error in approving Aduhelm, advocates for people with Down syndrome were infuriated. The exclusion means people in the health program with the genetic condition would not be able to get the drug unless they have additional coverage, perhaps through Medicaid, which is required to cover FDA-approved drugs, or pay for the treatment themselves.
Samantha Budd Haeberlein, head of neurodegeneration development at Biogen, said in an interview that the company believes “we should conduct a study” in the Down syndrome population “to define the safety and efficacy in that population,” and had planned to do so. But she said the tentative Medicare decision had pulled the company’s attention “into other directions.
Ances’s laboratory, and several others across the country, are tracking biological changes in the brain, blood and cerebrospinal fluid of adults with Down syndrome to identify biomarkers that herald the onset of Alzheimer’s disease. The efforts are part of a National Institutes of Health initiative to examineMany of the changes in biomarkers occur at an earlier age but are similar to changes seen in adults in the broader population who develop Alzheimer’s later in life.
The disease tore at the heart of her family. For years, her brother, Mark, who had Down syndrome, lived on his own. He cheered the Minnesota Vikings, read Hardy Boys books and worked at McDonald’s. But in his mid-50s, Mark became increasingly confused. One day, he showed up at work at 4 a.m. When Rasmussen visited Mark, he thought she was their niece. “Dana, what are you doing here?” he asked.
The biomarker study is laying the groundwork for what scientists hope will be the next step — enrolling people with Down syndrome in clinical trials for Alzheimer’s drugs. Considering how much people with Down syndrome have to overcome, “they should be at the forefront of clinical trials,” USC’s Rafii said.a group of 120 people with the genetic condition to track over time and be quickly enrolled in Alzheimer’s trials run by an international network of experts.
But echoing those who oppose the limitations, especially the trial exclusion for people with Down syndrome, Jenny Acosta, a physician assistant in Missouri, said, “Everyone deserves an opportunity to benefit from life enhancing and preserving medications.”of outside experts and remain convinced that data from similar drugs will show that a drastic reduction of amyloid beta predicts a slowing of cognitive decline in patients.
Robert Califf, the new FDA commissioner, said recently the Aduhelm approval “has temporarily impacted the trust in the FDA by people who pay attention to these things.” He madeMany Alzheimer’s experts say they understand the frustration of the Down syndrome community but that Aduhelm is not worth fighting for.
United States Latest News, United States Headlines
Similar News:You can also read news stories similar to this one that we have collected from other news sources.
Tencent shuts down its rival to Amazon's Twitch as China's crackdown on tech continuesTencent is shutting down its game streaming service, the latest retreat by Big Tech in the face of a sweeping crackdown by Chinese regulators
Read more »
Tearing down walls between blockchainsGo multichain effortlessly: XP.NETWORK supports more chains than any other NFT protocol.
Read more »
Turn that pelvic frown upside down - Chicago ReaderSavageLove: 'I'm a man in his 30s in Boston. I just got ghosted and want some advice on how to handle it.'
Read more »
Hopes Run High For Giants As Clock Counts Down To Opening Day's First PitchFor the first time in three years, the San Francisco Giants will be welcoming a sold-out crowd to Oracle Park Friday as hopes were soaring high among the faithful for a repeat of last year's historic National League West championship season.
Read more »
Oscars slapper Will Smith says he turned down ‘Django’ due to ‘violence’“I don’t believe in violence as the reaction to violence,” he said in a resurfaced 2015 interview. “So when I’m looking at this, it’s like, ‘No, no, no. It…
Read more »
Roller Coaster Road residents express concerns, new tech could help slow drivers downWith the twists and bumps, Roller Coaster Road certainly lives up to its name. Residents in the area are concerned that people are driving above the speed limit, leading to crashes. Lora Key, one of the residents, said some of the crashes even end up on her neighbor's front yards.
Read more »