Twitch is a platform that provides content creators the opportunity to livestream video games, cooking, political commentary, travel, or anything else that the creator chooses, so long as it falls within the platform’s terms and conditions.

Twitch enters into an agreement with each of its partnered content creators, allowing them to monetize their channels and splitting the revenue received from subscribers who pay up to $24.99 per month to support their favorite streamers. This arrangement has been lucrative for Twitch, and content creators with large followings can make well into the high six figures annually, with the very top echelon pushing into seven figures in earnings. Many leverage their fame and reach into other lucrative opportunities for sponsorships or content creation on other platforms.

Cracking the Façade to Find an Ugly Reality

One of those enormously successful streamers is a 28-year-old named Kaitlyn Siragusa, better known by her Twitch handle, Amouranth. She’s one of several young women who have attracted vitriol and blowback from some corners of the internet and media for leveraging their appearance, sexuality, and charm as part of their online personality to make a living. Whether you agree with her persona and presentation or not, you can’t argue with her success. Siragusa pulls in a reported seven figures per month, Twitch being her primary platform.

But the reality is much darker.

Beyond the standard harassment that any woman in the public eye, particularly in the historically male-dominated world of gaming and streaming – sadly experiences, Ms. Siragusa revealed on a live stream on October 16^th that she’s not actually single, as she’s represented in the past. In fact, she’s married to her trafficker.

She’s alleged she’s a victim of labor trafficking, her husband forcing her to stream and create content – some of it risqué – against her will. Live on stream she showed text messages from her husband in which he threatens her with financial abuse and her pets with physical harm if she doesn’t comply and keep up the facade. She claimed he’s taken control of her finances and bank accounts and has physically broken the door to the room in which she streams so she can’t lock him out.

“I’m basically living in a fancy prison,” she said.

The recording of the stream has since been deleted.

Toxicity, Misogyny, and Liability

Fellow prominent Twitch streamers broadcast their support for Ms. Siragusa across their own social channels, but a vocal contingent of her community and other streamers, some with enormous reach, had a different perspective.

The issue, they said, wasn’t that she had been forced to entertain them against her will. The issue was that she pretended to be single when she wasn’t and because they’d been duped, they deserved refunds for all the money they’d spent supporting her.

Twitch is no stranger to controversy, but this time feels different. The company has banked millions of dollars from its partnership with Amouranth, but it seems clear that those profits were the direct result of exploitation and forced labor. Does Twitch, or any organization for that matter, have an obligation to the people from whose efforts the company profits?

I’m not an attorney, but it seems unlikely that there’s any legal exposure for Twitch or Amazon in this case. Siragusa is an independent contractor and thus has none of the myriad worker protections that those with employee status enjoy. Further, there’s been no indication that she told anyone at the company about her situation before she came forward publicly on her stream. The moral argument is more crucial in this case.

Twitch boasts up to 8 million unique streams every month. More than 31 million people visit the site or use the app every day. They employ more than 1800 people globally. It a dominant player in the streaming space.

What do you do as an industry leader when such an ugly situation comes to light on your platform and the response from certain corners of your customer base and creator community isn’t sympathy or support, but anger, misogyny, and victim-blaming? This is a question that cuts to the core of the kind of company Twitch wants to be, who they want to serve, and who they want to partner with as a business.

What Comes Next?

The easiest thing that Twitch, and by extension Amazon, could do would be to ignore the situation entirely, to put the onus on Ms. Siragusa to manage the crisis on her own. That’s not how a responsible organization behaves, but it wouldn’t be entirely unexpected.

Though there may not be a legal obligation for Twitch to investigate whether this is an isolated incident, could a conscientious organization really fail to do so? Can a company live with itself, and what price will it pay in the court of public opinion, if it does nothing or stays silent when entangled in something as ugly as this that its directly profited from?

If you’re a woman who works at Twitch, or who streams on the platform, how would you feel about an organization that’s historically done relatively little to stem harassment and toxicity and is now silent after this revelation by one of their partners? I might find myself questioning how many other prominent young women on the platform are being forced to work against their will.

I would argue that the time is now for some introspection, and an evaluation of how the platform incentivizes content creators and protects potentially vulnerable individuals. Children as young as 13 can stream on the platform, after all. Is there more that Twitch could be doing? Almost certainly.

These are uncomfortable questions that should concern an organization if they’re being asked by employees or business partners, and even if the microscope of public scrutiny hasn’t found Twitch or Amazon yet, it’s only a matter of time should other content creators on the platform come forward, inspired by Ms. Siragusa’s bravery.

You can’t be dedicated to responsible business practices only when it’s convenient. It requires getting your hands dirty when things get complex and messy, taking ownership, and showing leadership. You don’t need to have all the answers, but people know the difference between right and wrong. Make sure they know that your company does too.

Neither Twitch nor its parent company, Amazon, have to this point issued a statement on the matter.

Ms. Siragusa published a recent video announcing that her husband is “getting help” and that she has regained access to all her finances and accounts and is “seeking legal and emotional counsel.”

The post Amouranth, Twitch, Amazon, and the Unraveling of Compassion and Common Sense appeared first on Medika Life.

No man is an island entire of itself; every man 
is a piece of the continent, a part of the main; 
if a clod be washed away by the sea, Europe 
is the less, as well as if a promontory were, as 
well as any manner of thy friends or of thine 
own were; any man's death diminishes me, 
because I am involved in mankind. 
And therefore never send to know for whom 
the bell tolls; it tolls for thee.

We are “a part of the main” and will be in their lives as long as we live. Some will blame crime on these kids when they are teens. They will be vilified as criminal types without considering how the roots of their behavior may have been sown by poverty, discrimination, and a lack of respect for them.

The jails will burst with populations of now-grown kids who never had a chance because they were denied that once daily free school lunch or breakfast. How can a simple school lunch bring on such cultural destruction? How can it not?

Each morning, kids will trek off to school hungry with empty stomachs and know that little will be there for them when they return home. Their one hope is that the school will provide the two meals a day that will sustain them and ward off the illnesses found in the poverty pockets of our country.

There’s a program for kids whose families exist on the poverty level; DonorsChoose.org. I heard a heartwarming story about two little boys who had received their only pair of pajamas from their teacher. They were so thrilled that they wanted to wear the pajamas home. Is your heart moved? Mine is.

Teachers often ask the program for things like afternoon snacks for their students or bottled water, or even clothes detergent that the family can’t afford. Those education saints provide many of the schoolroom supplies with their own money, and the charity has meant a way to give the kids a bit more.

A Young Mind’s Need for Nutrition

Numerous research articles have supported the importance of adequate nutrition for the body and the brain during a child’s first one thousand days of life. It is a time of growth, potential resilience, and potential for the future.

The pathway to adult life is formed early in a child’s life, and long-term brain function, cognition, productivity, and life, generally will be laid down during those early years. Normal brain development depends on early, adequate nutrition during pregnancy and infancy and those critical growth periods as they progress through the school system.

How does an undernourished, and consequently unmotivated child, respond to any educational environment? That’s where the neurons in the brain will be the ones upon which later development (aka stacking where learning new concepts are stacked onto older concepts already learned) will depend. If we do not tend to those early brain connections (synapses), we are committing the gravest of sins.

Protein is probably the most important element in a child’s diet because if it is not there, their development will not progress. Yes, the body can make certain essential proteins, but not all of them. Decreased amounts may be responsible for potential atrophy in the brain.

How does a child with brain atrophy (usually before the age of 3–4) respond in a school setting? We all know the answer; they have low IQs and they are discriminated against even further. There’s no secret regarding how much protein a child needs each day; if they don’t get it at school, they will lag behind others. Then they become the object of derision and bullying.

Estimates are that over 20K proteins make up our bodies. But we cannot make all of them and of the needed proteins or amino acids, some must be gotten from food. Nine amino acids ( — histidine, isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine — known as the essential amino acids, must come from food. What if a child’s diet doesn’t contain all of them? You’ve already read the answer above.

Yes, the poor around the world have tried creative ways to work with meager budgets and still provide families with needed protein — usually in recipes that meld the ingredients to form proteins. Rice and beans aren’t simply delicious, they are nutritious and provide needed protein on a fixed income.

School Breakfast and Lunch

The free meals program for children who would get breakfast and lunch free of charge at a school was adjusted during the pandemic. No applications were required, and each child who needed one was given a free meal each day. An act known as the Keep Kids Fed Act, signed in 2022 did provide additional funding for school meal programs and extended waivers but not all students were eligible.

Some families were given meals at a reduced price, some were free and others were required to pay for school meals. What happens when a child doesn’t have the money to pay for their school meal? You guessed it, they go hungry. Unless some kind person on the lunch line decides to give them a free meal at the potential loss of their job, they will not get fed.

Of course, in any large program during a time of serious health problems, supply chain disruptions happened in 2021 and 98% of the programs reported shortages of either supplies or packaging and some items were discontinued by the vendors.

The benefits of free school meals to undernourished, poverty-stricken children and their families (sometimes children will be given extra meals to take home) cannot be overstated. Some of the benefits of these programs include obesity prevention, and increase in overall student health and academic achievements and, of course, combating children’s hunger.

A few food programs are School Breakfast Program, National School Lunch Program, and pediatrician Robert Murray, MD, noted the importance of nutrients and brain/child development. He and others believe that breakfast does matter for these kids.

Do these kids only need meals during the school months? Most certainly not. What about the summer when some kids go away to camp or their relatives’ beach houses? These kids are left behind, which is why the Summer Food Service Program exists. What about winter or spring breaks? I hope the planning has included them, too.

We can’t say we’re fighting crime by putting people in jail if we also fail to fight childhood nutrition. OK, not all criminals were hungry kids, but I’ll bet many of them were or felt humiliated by how they were treated in school.

“As the twig is bent, so is the tree inclined” has more meaning than we care to consider. Hunger is one of those weights bending the twig.

The post Why Waste Money on School Lunches for Poor Kids? appeared first on Medika Life.

The longevity economy

Today, if all older people worked the way older Icelanders do, it would add $3.7 trillion to the global economy every year, without counting the value of unpaid work. It would give older people dignity and fulfilment and empower them even more to volunteer, run community institutions, care for children (freeing up younger adults to work), and do all the other things that build “social capital,” as economists call it.

A failure to invest in prevention for older people will have appalling economic consequences. Pre-COVID numbers suggested that by 2035, forty percent of the G20 workforce will be aged 50 or above (up from 30 percent in 2015). And they will be more needed than ever: the UK, for example, will be short 2.6 million workers by 2030. There are compelling suggestions that much of today’s labour shortage is caused by the withdrawal of older people from work during the pandemic: between 1993 and 2019, labour force participation doubled for the over 65s; it has declined since 2019.

Often these discussions provoke a union leader or populist politician to draw a picture of a ninety-year-old teetering at the top of a fire ladder struggling with a bucking horse. The average person working just two or three years longer would dramatically benefit the individual and collective prosperity. Most retire before their state pensions start, so they would also have more savings throughout retirement.

While older workers will generate 40 percent of all earnings, in proportion to the share of the workforce they constitute, they spend much more than younger households do. Across the G20, which contains many emerging economies with young populations, 56% of total spending in 2015 came from families over 50. The mortgage is paid off; the children are finishing university, and investments may provide returns; why not buy stuff for the grandchildren and live a little? Data suggest that a 0.1% increase in spending on disease prevention could increase spending by older people by 9% per year. That spending, of course, creates jobs and growth across the economy — the global longevity dividend.

“Household savings is the main domestic source of funds to finance capital investment, which is a major driver of long-term economic growth,” according to the Organisation for Economic Cooperation and Development. Those savings are depleted when a household member becomes unwell, especially in countries with no national health system. If granny gets severely ill with pneumonia, you will spend whatever you have got to secure her treatment. Keeping older people healthy leaves household savings at work, creating economic growth.

The politics of medicine

If healthier, more productive citizens will make society much richer, why aren’t our politicians just getting on with doing a better job of preventing the diseases of later years?

We wrestled with this problem throughout a fascinating, three-day meeting on prevention and healthy-ageing organised recently by the International Longevity Centre UK (despite its name, ILC UK works internationally and we were lucky enough to spend three days at the Annecy global health centre run by the Mérieux Foundation). We came up with the same objections to democracy that troubled many ancient Greeks.  I spent enough time taking notes to have raided the presentations of almost every expert there but, sadly, not enough to credit those whose data I am using. You can see videos of each day here.

Elected politicians today need to expend a little money and a lot of political capital to realise benefits across the decades ahead. Those politicians are extremely unlikely to be the ones who get to claim the glory for any of the work they put in. One delegate said it was like building a new high-speed railway, but it was even more difficult. The minister commissioning the railway spends but never travels; her successor who sees it through planning objections hears the objections of people who live near the track, but never the thanks of commuters; his successor …. You get the picture … At least each of them gets a photo opportunity, a news segment from atop an impressive piece of earth-moving equipment, a commissioning ceremony at the factory building the carriages, or a meeting with grateful businesses and trades unions.

An ambitious health minister could generate a massive medium-term health bonus by improving the coverage of adult vaccines that we know work; she, though, spends and battles but never gets a political reward. Good flu vaccines are 80 or 90 percent effective at keeping you out of the hospital. They also prevent atherosclerosis and heart disease. The good ones cost a bit more than the cheap ones.

Our health minister must increase vaccine spending, face a few sceptical health professionals, and deal with a Twitter storm of abuse from anti-vaxxers. It is easy to see why 50 new A&E beds look like a more appealing opportunity to the minister’s political adviser. The patients occupying those beds should be furious that the minister’s failure to invest in vaccines put them there; instead, they’re ready to go on camera, being pathetically grateful for the wonderful care they received while on a ventilator.

Once we get beyond flu, things are even more politically challenging. Only 29 percent of Europeans know they can be protected against pneumonia, so fewer than five percent of patients with heart failure, diabetes, or COPD get the pneumococcal vaccine for which they are eligible. Hardly anyone knows about emerging research that shows that rotavirus vaccination in children prevents type 1 diabetes or retrospective research that suggests that a full course of childhood immunisation helps prevent dementia in later life. What is an ambitious politician to do?

Fossilised medical systems force patients onto those ventilators even if funding is forthcoming. In many countries in Europe, a patient who wants a flu or pneumococcal vaccine must go to the doctor to get a prescription; take the prescription to the pharmacy and pick up a vial; then, before the vial gets too hot for too long, go back to the doctor to be injected. No wonder one in four Europeans lives with at least two chronic conditions, but only 45 percent of those with chronic conditions get a flu vaccine.

Every effort to streamline this system triggers pushback from everyone who will lose prescribing, dispensing, or administration fees. Picking a fight with doctors is rarely good for political careers.

Once the disease is established, often diagnosis and prescribing are not enough. Fewer than half of European patients who have been diagnosed and are receiving prescriptions have control of their blood pressure or high cholesterol after three years. Just when taking the pills should be becoming a mindless habit — after three or four years of daily pill taking — it falls quite fast. And we have no idea why. It might be the mechanics of getting prescriptions renewed, refilled and reimbursed. (Yet another part of that fossilised medical system — is there any reason discount supermarkets should not sell 100 packs of cholesterol-lowering medicines for €5? It is certainly less dangerous than the hot dogs and cream pastries they sell in vast quantities). It may be that the pills are reminders of disease and mortality that the pill taker would rather forget. Either way, there are few opportunities for ribbon cuttings or front-page photos and few incentives for politicians to change things.

The politics of health

To get the best value for money, our poor politicians should focus on non-medical interventions too. Those, though, are even less good for her career.

Let’s start at the extreme. Some data suggest that children who grow up bilingual progress to Alzheimer’s about five years later than a monolingual child. It would be one of the greatest bargain health interventions ever, if true. Sketchier data suggest that benefits also accrue to adults who learn a second language later in life. That might be politically feasible in Scandinavia, but do you want to be the French politician who requires universal bilingual pre-schooling or the American one who tells 40 year olds to go out and learn Mandarin?

Let’s be a little less ambitious. Governments must mandate reductions in sugar, salt and fat content because less salt and sugar prevents many chronic diseases, but our tastes change as a herd. If you don’t believe me, ask Coca-Cola: Fanta has 43g of sugar per 330 ml in India but only 23g in the UK. Coke says the difference is to account for local tastes. Still, it may have something to do with pressure by the UK government to reduce sugar content or face further taxes. High sugar is good for sales: refined sugar is highly habit-forming, but Coca-Cola used an average of 17% less sugar in its drinks in the UK in 2018 than in 2015. Voluntary agreements between industry and the four governments of the UK have also led to substantial falls in the average salt content in seventy-six food categories. And consumers did not notice unless they bought a Fanta in Mumbai, got on a plane and bought one in London eight hours later.

Coca-Cola was founded by a Confederate Civil War veteran and its original recipe was even more addictive as it contained cocaine. That Fanta with 23 or 43 grammes of sugar is the brand created by Coca-Cola in Germany to quench Nazi thirsts after December 1941 when Coke syrup from the United States became er… unavailable. So fond were senior Nazis of Fanta, that Coca-Cola Germany got an exemption from sugar rationing. Much of the production up to mid-1945 was produced by slave labourers kidnapped from across Europe by Coke’s Nazi fans. You will have gathered by now that promoting human welfare has always been quite low on the agenda of the soft drinks industry but keeping in with those in power has always had a high priority.

Taxes on addictive convenience foods could fund subsidised access to fresh fruit and vegetables. However, the producers of undifferentiated oranges have limited lobbying budgets. In contrast, the producers of sugary drinks spent $7 million in 2018 in California alone in a successful effort to restrict local taxes on their products.

Treats for politicians

I charge clients a lot for my public affairs consulting, so I should not admit this, but if you have ever trained a dog, you know most of what you need to know about working with politicians and the officials who report to them.

Positive reinforcement is the best way to get a dog to do what you want. Every time the puppy performs outside instead of on the carpet, he gets a treat, a pat on the back, or both. Every time the dog eyeing up the sheep hears a dog whistle and returns; she gets a special toy. If a dog is about to run into traffic or go after that sheep, you may need a short smack and a loud “no”. Be careful, though: negative reinforcement sometimes has unpredictable consequences. Smacking a dog all the time or using a shock collar may turn a friendly and cooperative animal into one who is so scared that he tries to avoid you.

Politicians respond precisely the same way as dogs. It is important to remember that most are a bit more intelligent and sophisticated than the average labrador and got elected because they want to improve the world, however many compromises they had to make to win power. So, while Rover will be primarily focussed on a ball or a sausage, you need to spend a bit more time understanding the motivation and ideas of politicians and fit into their Weltanschauung whenever you can.  Talk to a libertarian about preserving individual autonomy; talk to a Conservative about keeping families together; talk to a socialist about community responsibility. With any luck, all paths will lead to healthy ageing policies.

Depending on the country’s civil service system, officials who work for politicians will often have real skills and a deep understanding of health, ageing and economics. However, the effective ones know that their learning will be wasted unless they can think like a politician and package things in a way their political masters will accept.

What does all this mean for getting healthy ageing pushed up the political agenda? We have a lot to offer in the way of positive reinforcement. The average eighty-year-old is four times as likely to vote as the average eighteen-year-old. As discussed above, the eighty-year-old is likelier to have discretionary income to contribute to political parties and campaigns. In some countries, such as the USA, many already belong to powerful political action groups. The challenge is to get the constituency mobilised around vaccinations, not ventilators.

When we need it, we can deliver the slaps too. Opinion research shows that young people do not see a generational tussle for resources with their grandparents. They want to do the right thing; they worry that it’s unaffordable. And without action on prevention now, it will be.

Getting the old or young to vote based on the minutiae of vaccine delivery systems or the speed of change in the content of processed foods is a non-starter. We need to learn from people whose goals we may not share. The National Rifle Association in the United States has managed to stop any meaningful new restrictions on firearms by skilfully mobilising its base — so skilfully that they negate the 80 percent or so of Americans who favour the restrictions. The ins and outs of gun control policy are as arcane as the details of keeping older people healthy. The NRA, though, gives every legislator a rating. A few of its supporters check the details; most look for a good NRA rating. We need a healthy ageing rating.

The nature of effective political action is compromise and refusing to allow the perfect to be the enemy of the good. To work, this score will need to be endorsed by a range of professional groups, groups of older people and consumer organisations. Some commercial entities may even want to join in: health insurers, for example. None will get everything they want; most could get what they want. 

The proposal is short on details, but we must find a way of incentivising today’s politicians to do things that will deliver benefits over the decades ahead.

The post The Tricky Politics of Healthy Ageing appeared first on Medika Life.

If you listen to the nation’s largest Alzheimer’s disease advocacy organizations, you might think everyone living with Alzheimer’s wants unfettered access to Aduhelm, a controversial new treatment.

But you’d be wrong.

Opinions about Aduhelm (also known as aducanumab) in the dementia community are diverse, ranging from “we want the government to cover this drug” to “we’re concerned about this medication and think it should be studied further.”

The Alzheimer’s Association and UsAgainstAlzheimer’s, the most influential advocacy organizations in the field, are in the former camp.

Both are pushing for Medicare to cover Aduhelm’s $28,000 annual cost and fiercely oppose the Centers for Medicare & Medicaid Services’ January proposal to restrict coverage only to people enrolled in clinical trials. Nearly 10,000 comments were received on that proposal, and a final decision is expected in April.

“With respect, we have no more time for debate or delay,” the Alzheimer’s Association national Early-Stage Advisory Group wrote in a Feb. 10 comment. “Every passing day without access to potential treatments subjects us to a future of irreversible decline.” For its part, UsAgainstAlzheimer’s called CMS’ proposal “anti-patient.”

Yet the scientific evidence behind Aduhelm is inconclusive, its efficacy in preventing the progression of Alzheimer’s remains unproved, and there are concerns about its safety. The FDA granted accelerated approval to the medication last June but ordered the drugmaker, Biogen, to conduct a new clinical trial to verify its benefit. And the agency’s decision came despite a 10-0 recommendation against doing so from its scientific advisory committee. (One committee member abstained, citing uncertainty.)

Other organizations representing people living with dementia are more cautious, calling for more research about Aduhelm’s effectiveness and potential side effects. More than 40% of people who take the medication have swelling or bleeding in the brain — complications that need to be carefully monitored.

The Dementia Action Alliance, which supports people living with dementia, is among them. In a statement forwarded to me by CEO Karen Love, the organization said, “DAA strongly supports CMS’s decision to limit access to aducanumab to people enrolled in qualifying clinical trials in order to better study aducanumab’s efficacy and adverse effects.”

Meanwhile, Dementia Alliance International — the world’s largest organization run by and for people with dementia, with more than 5,000 members — has not taken a position on Aduhelm. “We felt that coming out with a statement on one side or another would split our organization,” said Diana Blackwelder, its treasurer, who lives in Washington, D.C.

Blackwelder, 60, who was diagnosed with early-onset Alzheimer’s in 2017, told me, “To say that millions of people afflicted with a disease are all up in arms against CMS’s proposal is just wrong. We’re all individuals, not a collective.”

“I understand the need for hope,” she said, expressing a personal opinion, “but people living with dementia need to be protected as well. This drug has very serious, frequent side effects. My concern is that whatever CMS decides, they at least put in some guardrails so that people taking this drug get proper workups and monitoring.”

The debate over Medicare’s decision on Aduhelm is crucial, since most people with Alzheimer’s are older or seriously disabled and covered by the government health program.

To learn more, I talked to several people living with dementia. Here’s some of what they told me:

Jay Reinstein, 60, is married and lives in Raleigh, North Carolina. He was diagnosed with early-onset Alzheimer’s disease three years ago and formerly served on the national board of directors of the Alzheimer’s Association.

“I understand [Aduhelm] is controversial, but to me it’s a risk I’m willing to take because there’s nothing else out there,” Reinstein said, noting that people he’s met through support groups have progressed in their disease very quickly. “Even if it’s a 10% chance of slowing [Alzheimer’s] down by six months, I am still willing to take it. While I am progressing slowly, I want more time.”

Laurie Scherrer of Albertville, Alabama, was diagnosed with early-onset Alzheimer’s and frontotemporal dementia in 2013, at age 55.

Early on, she was prescribed Aricept (donepezil), one of a handful of medications that address Alzheimer’s symptoms. “I became totally confused and disoriented, I couldn’t think, I couldn’t concentrate,” she told me. After stopping the medication, those symptoms went away.

“I am not for CMS approving this drug, and I wouldn’t take it,” Scherrer said. At discussion groups on Aduhelm hosted by the Dementia Action Alliance (Scherrer is on the board), only two of 50 participants wanted the drug to be made widely available. The reason, she said: “They don’t think there are enough benefits to counteract the possible harms.”

Rebecca Chopp, 69, of Broomfield, Colorado, was diagnosed with early-onset Alzheimer’s in March 2019. She’s a former chancellor of the University of Denver.

Chopp is a member of a newly formed group of five people with dementia who meet regularly, “support one another,” and want to “tell the story of Alzheimer’s from our perspective,” she said.

Two people in the group have taken Aduhelm, and both report that it has improved their well-being. “I believe in science, and I am very respectful of the large number of scientists who feel that [Aduhelm] should not have been approved,” she told me. “But I’m equally compassionate toward those who are desperate and who feel this [drug] might help them.”

Chopp opposes CMS’ decision because “Aduhelm has been FDA-approved and I think it should be funded for those who choose to take it.”

Joanna Fix, 53, of Colorado Springs was diagnosed with early-onset Alzheimer’s disease in October 2016. She, too, developed serious complications after taking Aricept and another dementia medication, Namenda (memantine).

“I would love it if tomorrow somebody said, ‘Here’s something that can cure you,’ but I don’t think we’re at that point with Aduhelm,” Fix told me. “We haven’t been looking at this [drug] long enough. It feels like this is just throwing something at the disease because there’s nothing else to do.”

“Please, please take it from someone living with this disease: There is more to life than taking a magic pill,” Fix continued. “All I care about is my quality of life. My marriage. Educating and helping other people living with dementia. And what I can still do day to day.”

Phil Gutis, 60, of Solebury, Pennsylvania, has participated in clinical trials and taken Aduhelm for 5½ years after being diagnosed with early-onset Alzheimer’s in 2016.

He’s convinced the medication has helped him. “I don’t know how to describe it other than to say my head feels so much clearer now,” he told me. “I feel much more capable of doing things now. It’s not like I’ve gained my memories back, but I certainly haven’t deteriorated.”

Gutis thinks CMS’ proposed restrictions on Aduhelm are misguided. “When the FDA approved it, there was this sense of excitement — oh, we’re getting somewhere. With the CMS decision, I feel we are setting the field back again. It’s this constant feeling that progress is being made and then — whack.”

Christine Thelker, 62, is a widow who lives alone in Vernon, British Columbia. She was diagnosed with vascular dementia seven years ago and is a board member for Dementia Advocacy Canada, which supports restrictions on Aduhelm’s availability.

“Most of us who live with dementia understand a cure is not likely: There are too many different types of dementia, and it’s just too complicated,” Thelker told me. “To think we’re just going to take a pill and be better is not realistic. Don’t give us false hope.”

What people with Alzheimer’s and other types of dementia need, instead, is “various types of rehabilitation and assistance that can improve our quality of life and help us maintain a sense of hope and purpose,” Thelker said.

Jim Taylor of New York City and Sherman, Connecticut, is a caregiver for his wife, Geri Taylor, 78, who has moderate Alzheimer’s. She joined a clinical trial for Aduhelm in 2015 and has been on the drug since, with the exception of about 12 months when Biogen temporarily stopped the clinical trial. “In that period, her short-term memory and communications skills noticeably declined,” Jim Taylor said.

“We’re convinced the medication is a good thing, though we know it’s not helpful for everybody,” Taylor continued. “It really boosts [Geri’s] spirits to think she’s part of research and doing everything she can.

“If it’s helpful for some and it can be monitored so that any side effects are caught in a timely way, then I think [Aduhelm] should be available. That decision should be left up to the person with the disease and their care partner.”

[Also related to this story, please see: “Were the Billions Invested in Alzheimer’s Research Worthwhile?” by Medika Life editor-in-editor Gil Bashe.]

The post Patients Divided Over Alzheimer’s Drug: Is It a ‘Risk I’m Willing to Take’ or Just a ‘Magic Pill’? appeared first on Medika Life.