Latest news with #NDSS
Yahoo
2 days ago
- Health
- Yahoo
A Donor Heart Saved Her Life. Why Are Others With Down Syndrome Denied Transplants? (Exclusive)
Charlotte Woodward was born with a heart defect, as nearly half of all people with Down syndrome, and 13 years ago, received a donor heart that saved her life Research has shown people with Down syndrome and other disabilities face discrimination when being evaluated for organ transplants Woodward has been fighting for justice for others with disabilities in need of transplants, and now a bill that could help is awaiting a floor vote in CongressCharlotte Woodward's doctors tell her she's a boring patient — even though she lives with a transplanted heart. 'It's because I'm so healthy,' she explains. 'I take very good care of my heart.' Woodward, 35, knows she's lucky. Born with a heart defect — like nearly half of all people with Down syndrome — she received her donor heart in 2012. But research has shown that more than 40% of pediatric transplant centers often consider intellectual disabilities a cause for concern when evaluating for organ transplants, because of assumptions that patients with disabilities may not be able to care for themselves and because of 'preconceived notions about their quality of life,' says Michelle Sagan, communications director for the National Down Syndrome Society (NDSS). 'Their life is seen as not as important.' Another study found that adults with intellectual and developmental disabilities are less than half as likely to receive a kidney transplant as adults without IDD. Woodward has been working to change that. In 2020, she led a successful campaign to pass a bill in her home state of Virginia protecting those who are disabled from transplant discrimination. And now a similar federal bill named in her honor has been passed by a House committee and is headed for a floor vote in the House. It aims to provide protections, in part by mandating an expedited judicial review if someone is denied a transplant and believes their civil rights have been violated. 'People with Down syndrome and other disabilities should not be denied a lifesaving opportunity,' says Woodward, a program associate at the NDSS who went viral on the group's TikTok in 2020 for her video on "Things About Having Down Syndrome That Don't Make Sense". 'We need a legal solution to make it clear that blatant discrimination is wrong and is not permissible. I don't think people are doing it maliciously. They're just uneducated. It's rooted in fear and ignorance." From the day she was born, Woodward was underestimated, says her mom, Darcy. 'I was told she most likely never would read or write. It bewildered me. I didn't understand how someone could predict a baby's future.' Darcy ignored the warnings and read to her daughter, who learned to read by the time she was 4: 'I've been in awe of her every day of her life.' Her health was more concerning. She had four open-heart surgeries by age 10, and by the time she was 22, her heart began to fail. Her cardiologist told her mom he would have to 'go to bat' and work to convince hospital officials to get her name on the transplant list. 'He knew there might be opposition from the transplant team,' Woodward says. Fortunately she was matched with a donor heart in less than two weeks — and went on to graduate summa cum laude with a sociology degree from George Mason University. When Woodward, who loves to dance, is learning to play the electric guitar, and is in a long-term relationship with Peanut Butter Falcon actor Zack Gottsagen — began her job at NDSS, she learned her transplant experience was not the norm. The knowledge pained her. 'There have been many stories about denials of organs and transplants. We will never know how many,' she says, tearing up. 'I think, 'How could you?' ' The solution, she says, is legislation and education. 'I don't think people are doing it maliciously. It's rooted in fear and ignorance,' says Woodward, who urges people to consider organ donation — and call their representatives in Congress and urge them to support her bill. 'People with Down syndrome are just that: people. They have strengths and challenges like everyone else. They shouldn't have to prove their worth in order to get a transplant.' Read the original article on People
Yahoo
3 days ago
- Health
- Yahoo
Are We Choosing Which Lives Deserve To Be Born? The Quiet Genocide
Advancements in prenatal screening have enabled early detection of genetic conditions like Down syndrome. But in some parts of the world, this progress has quietly led to the near-eradication of individuals with the condition — long before birth. In Iceland, around 85% of expectant mothers undergo first-trimester genetic screening. Nearly 100% of those who receive a prenatal diagnosis of Down syndrome choose to terminate the pregnancy. Only two or three babies with the condition are born there each year. Denmark reports a termination rate of over 95%. In France, it's around 77%. These numbers have sparked concern among ethicists and disability advocates, who warn of a troubling cultural shift: one that frames the existence of disability as undesirable — and preventable. The American Context In the United States, where prenatal screening is optional and unstandardized, the termination rate after a Down syndrome diagnosis ranges from 60% to 90%, depending on geography, access to care, and socioeconomic status. Despite these figures, advocacy groups like the National Down Syndrome Society (NDSS) offer a different perspective. According to their 2022 Fact Sheet, life expectancy for individuals with Down syndrome has risen from 25 years in 1983 to more than 60 years today. People with the condition increasingly live independent lives, attend school, hold jobs, and contribute meaningfully to their communities. 'Contemporary Eugenics' and the Role of NIPT The AMA Journal of Ethics has raised a pressing question: Are today's prenatal screening practices — particularly non-invasive prenatal testing (NIPT) — a modern form of eugenics? Unlike the coercive eugenics of the 20th century, contemporary eugenics doesn't require state enforcement. It operates subtly through individual decisions, medical norms, and cultural assumptions about what kinds of lives are 'worth living.' NIPT, which detects chromosomal conditions like Down syndrome as early as 10 weeks, may give the illusion of 'informed choice' while implicitly devaluing disability. 'Even making screening available for Down syndrome… is already, by definition, suggesting that they are not valued reproductive outcomes,' the article states. The concern, as the authors put it, is that society may be shrinking the definition of 'normal' while expanding the definition of 'abnormal' — a shift driven not by malice, but by medicine, convenience, and silence. Frank Stephens: A Voice for the Valued That silence was broken in a viral speech by disability advocate Frank Stephens, who has Down syndrome and testified before Congress: 'I would like to make three points. First, we are a medical gift to society — a blueprint for medical research into cancer, Alzheimer's, and immune system disorders. 'Second, we are an unusually powerful source of happiness. A Harvard-based study found that people with Down syndrome, as well as their parents and siblings, are happier than society at large. Surely happiness is worth something. 'Finally, we are the canary in the eugenics coal mine. We are giving the world a chance to think about the ethics of choosing which humans get a chance at life.' His testimony reframes the conversation: not just about disability, but about who gets counted as human — and what it means when entire categories of people begin to disappear. A Local Voice of Compassion Monty Bennett, a Dallas-based hotelier and philanthropist, is also the Publisher of The Dallas Express. But for Bennett, advocacy on behalf of children with disabilities is not just professional — it's personal. As the father of a special needs child, Bennett has witnessed both the challenges and the beauty of raising a child the world doesn't always understand. His experience has shaped his lifelong commitment to supporting and defending the value of every human life. 'Every life has a divine purpose, regardless of what chromosomes they carry,' Bennett told The Dallas Express. 'As the father of a special needs child, I've seen the challenges — and the incredible joy — that come with raising someone the world often overlooks. It breaks my heart to think of how many lives — full of love, dignity and joy — are quietly erased before they ever get a chance. 'Our son is an incredible blessing,' he added. 'If society measured value not by perfection but by compassion, children like him would be at the top of every list.' Bennett has long supported the development of early childhood programs that serve children with Down syndrome and other developmental disabilities. His philanthropy reflects a broader conviction — that children born with special needs deserve not just protection, but opportunities to thrive in a world that too often doubts their worth. Reframing the Future Disability rights advocates say the real danger isn't just the test — it's the unspoken cultural script that surrounds it. Campaigns like 'Don't Screen Us Out' warn that prenatal screening, especially when not accompanied by balanced counseling, becomes a method of informal eugenics. Choice, they argue, is only meaningful when society embraces the full spectrum of life — and supports parents, no matter the diagnosis. As prenatal technology advances, we're forced to reckon with what it reveals about us: Are we simply diagnosing? Or are we deciding who gets to be born?
ABC News
19-05-2025
- Health
- ABC News
RSV season ramps up as government examines whether to expand free vaccine access
As winter nears and the cold and flu season sets in, the highly infectious respiratory virus RSV has again begun its spread. So far this year, the National Disease Surveillance System (NDSS) has recorded more than 49,000 cases. More than half of those cases have occurred in New South Wales, but all states and territories have experienced a rise in RSV, or respiratory syncytial virus, infections. The RSV season typically occurs from May to September. Since it became a notifiable disease in 2021, a record number of 175,914 RSV cases were recorded by the NDSS in 2024, the highest on record. Pregnant women and some babies can access an RSV vaccine for free through Medicare or state-based programs, but other groups, including older Australians will have to pay. And the cost can be steep. Here's what you need to know about getting vaccinated. RSV is a highly contagious virus that is spread through droplets. You're at risk of contracting RSV when an infected person talks, coughs or sneezes near you, where the virus can enter your body through your eyes, mouth or nose. It can also be contracted when you touch a contaminated surface and don't wash your hands before touching your face. Usually, the first symptoms are: These symptoms tend to clear up on their own within a couple of weeks for adults who are in otherwise good health. However, RSV can be serious for infants, young children, the elderly, and people with chronic health conditions as it may lead to complications such as pneumonia, which can be life threatening. Yes, and the Australian Immunisation Handbook, put out by the Australian government, recommends RSV vaccines for certain population groups, including: Only pregnant women who are enrolled or eligible for Medicare can currently access the Abrysvo RSV vaccine for free under the federal government's National Immunisation Program. The government's $174.5 million investment kicked off in February 3 this year. Eligible infants and young children can also receive an RSV immunisation called Nirsevimab, also known as Beyfortus, for free through state and territory-funded programs, without the need for Medicare. The vaccine works by directly providing antibodies to the infant, providing immediate protection against RSV for up to six months. While the vaccines for eligible children are free, some providers may charge a service fee for the procedure. To find out more about child immunisations, visit the health website for your state or territory. Everyone else needs to purchase the vaccine, which can come at a steep cost. One Australian pharmacy chain advertises a dose of the Abrysvo RSV vaccine at more than $330. The high price of the vaccine itself, in addition to the cost of seeing a GP to get a prescription and have the injection administered if required, can be cost prohibitive. The Royal Australian College of General Practitioners (RACGP) is advocating for free access to RSV vaccines for everyone recommended by the Australian Immunisation Handbook. Dr Ramya Raman, the RACGP vice-president, said the vaccine had already been a "gamechanger" for the community. Case numbers have fallen since RSV vaccines and the monoclonal antibody were introduced, with 56,303 cases recorded from January to April 2024 compared with 40,380 for the same time period this year, according to data from the NDSS. Dr Raman said the RSV vaccine's proven success at reducing the number of infections and hospitalisations means "we've got to look at this as an opportunity and call for the expansion of it". "Given how common how this condition is and the effectiveness of the vaccinations it would be wonderful to see this within the schedule." This comes in light of the 2024 Annual Australian Respiratory Surveillance Report from the interim Australian Centre for Disease Control, which states that older Australians are more likely to die from RSV than younger Australians. The Pharmaceutical Benefits Advisory Committee (PBAC) is in charge of recommending what vaccines be made available for free in Australia. In November last year, the PBAC recommended the free provision of the Abrysvo RSV vaccine be expanded to include all adults over 75 and Aboriginal and Torres Strait Islander peoples over 60. But this change to the National Immunisation Program (NIP) has yet to occur. A spokesperson for the Department of Health, Disability and Ageing said: "Other steps need to be completed before a vaccine can be given final approval for NIP listing." "These include negotiations with the relevant pharmaceutical company; finalisation of conditions for listing; quality and availability checks; and final consideration by the government," the spokesperson said. They said the PBAC advised the department that "economic inputs should be revised for Abrysvo to become cost effective before it can be accepted for NIP listing". And while they said the government's considerations and decisions "cannot be pre-empted", they did confirm the department "is currently reviewing the PBAC outcome and is actively working with the vaccine sponsor on next steps". Health authorities recommend maintaining good hygiene practices to limit the spread of the virus. The government-funded service Healthdirect advises people to take the following steps:
