From CTV Toronto, Sudbury [Ontario] Star:

Minna Mettinen-Kekalainen of Sudbury, Ontario, who lost home health care over two months ago, will have her services reinstated on Monday. She has ALS and Asperger’s syndrome. Officials stepped in to work out a solution after home health nurses stopped treating Mettinen-Kekalainen due to “erratic behavior.”

France Gelinas, a member of Ontario’s provincial parliament, said the case would provide an impetus for the province to take a hard look at its home-care system. Care is provided by for-profit companies that bid competitively for government contracts.

“There has to be policy change in the way home-care services are delivered in this province,” Gelinas said.

“Otherwise there will be more and more Minnas out there, and this is not acceptable.”

See also: Debate a wasted opportunity – Sudbury Star

Earlier posts here and here.

An editorial in the Sudbury [Ontario] Star calls for swift action in the case of a woman with ALS and Asperger’s who is living in unhealthy conditions after being denied home care by a government-funded contractor. Minna Mettinen-Kekalainen says she was dropped after she threatened to report nurses who did not follow doctor-prescribed procedures.

An excerpt:

With our aging population, difficult home-care cases are going to come up more often. The health-care system needs to develop effective ways to address them.

Giving up on people cannot be part of the plan.

Earlier post here.

Stories in the Sudbury [Ontario] Star are here and here and here:

Minna Mettinen-Kekalainen, a 42-year-old Ontario woman who has ALS, says she is being denied home care by a government-funded contractor and as a consequence is being forced to live in conditions that are inhumane.

Mettinen-Kekalainen, who also has Asperger’s syndrome, began a hunger strike last week to garner publicity for her battle. She says she is being denied nursing care because she threatened to report nurses who weren’t following her doctor’s orders.

Richar Joly, the executive director of the North East Community Care Access Centre, has said his organization has a duty to ensure its workers are not subjected to harassment and abuse by clients.

France Gelinas, a member of Ontario’s provincial parliament, said she would investigate and press for a resolution of the dispute. Gelinas has been a harsh critic of for-profit nursing agencies being hired by community care access centers across Ontario. Private agencies, she said, …

“have refused care to a whole bunch of people and now they feel entitled to do that …

“How can they do this? It feels like if a client is difficult, and if there is no money in it, they say, ‘The heck with her.’”

See also:

• Students demonstrate for women who needs home care — Sudbury Star (video)
• Op-ed: ALS sufferer’s plight is shameful — by Carol Mulligan in the Sudbury Star

(Photo from the Sudbury Star)

From C-Span, CBS News, the Associated Press, the New York Times, the Washington Post, WashingtonWatch.com and elsewhere:

A bill aimed at providing accurate and comprehensive information to parents who receive a diagnosis of a disability for their child, either prenatally or after birth, died today in a massive Senate showdown over federal spending.

Senate Bill 1810 was among a package of about three dozen bills that went down in a partisan vote, as Senate Majority Leader Harry Reid attempted to break a logjam created by  Republican Sen. Tom Coburn of Oklahoma (above). Coburn, who has become known as the Senate’s “Dr. No,” had used a procedural device to block the bills, which included some $10 billion worth of bipartisan legislation.

Reid had hoped to outgun Coburn by combining the three dozen bills into one massive “Advancing America’s Priorities Act”, but the measure failed to rally the required 60 senators needed to bring it to a vote. Coburn had threatened a filibuster if the measure advanced.

What happens next was not immediately clear. The Senate is supposed to adjourn at the end of the week, but Mr. Coburn, who has blocked the programs by putting a personal “hold” on them, has said he would back most items if the lawmakers laid out ways to pay for them and did something about high gasoline prices.

S. 1810, co-sponsored by Sens. Edward M. Kennedy (D-Mass.) and Sam Brownback (R-Kan.), has been promoted by a coalition of advocacy organizations as a way of providing support for prospective parents who are increasingly undergoing prenatal screening and testing during their pregnancies. Kennedy and Brownback, from opposite sides of the political spectrum, have been seeking to pass such a bill for several years.

(more…)

From the New York Times:

When Chris Pendergast was diagnosed with amyotrophic lateral sclerosis (Lou Gehrig’s disease) in 1993, he wasn’t expected to live long. Now, almost fifteen years later, he’s using his long-term survivorship to draw attention to the need for more ALS research and immediate access to Medicare and Social Security benefits. His foundation, Ride for Life, has raised $3 million for research and patient services.

… Mr. Pendergast has no illusions about the Darwinian worlds he’s competing in – one for personal survival, the other for attention in the bazaar of marches and runs and walks for one cure or another. Most of the efforts, he said, are organized and supported by the people who have survived a disease. But 90 percent of people with A.L.S. are gone in five years. Almost no one lives as long as he has. So, he figures, if there’s a divine logic to his ability to survive, maybe this is it.

He’d like to see the disability community coordinate its efforts. “I don’t think different disease communities should be scrapping for pieces of the pie, ” he says. “I would like to have a bigger pie.”

PatientsLikeMe, an Internet start-up, creates information-rich communities for the chronically ill. Is it the next step forward in medical science – or just a MySpace for the afflicted?

Writing in the New York Times Magazine, Thomas Goetz describes what happens when patients band together on the Internet to share their most intimate medical information, from symptoms to drugs and dosages.

… PatientsLikeMe is a tool that allows patients to manage their disease with a sophistication and precision that would have been unimaginable just a decade ago. The 7,000 members of PatientsLikeMe, in other words, are beta testers – they may be the vanguard of how we all will care and treat our résumé of chronic diseases. They’re not typical patients, in the sense of waiting for advice from a doctor. They are, rather, co-practitioners treating their conditions and guiding their care, with possibly profound implications.

… Of course, turning patients’ experiences into usable data raises a host of questions for medicine. When patients take the reins of their own treatment, what role do doctors play? What’s to keep patients from misinterpreting the streams of data and finding false hope – and what’s stopping them from embarking on unproven and even risky treatments or dosages? And what happens if the real-world information at PatientsLikeMe contradicts the clinically proved protocols of medical science?