‘It’s not like I’m asking for anything new. I just need my medicine.’ Liability issue clouds access to medical pot

February 27, 2011

‘It’s not like I’m asking for anything new. I just need my medicine.’ Liability issue clouds access to medical pot

Sun Journal | February 26, 2011 | By Douglas Rooks

The medical marijuana law passed by voters in 2009 was supposed to create greater access to the drug for those suffering from a lengthy list of illnesses. It replaced a 1999 law, also enacted at referendum, that made it legal to possess marijuana as medicine but offered no system for patients to obtain it.

More than a year after the vote, and two months after the new registration system took effect, patients are still struggling to find doctors willing to write medical certificates, as is now required. And some patients are worse off than before.

One of them is Nicholas Stanley, 32, of Farmington, who was rendered quadriplegic by spinal muscular atrophy, a condition brought on by a congenital defect known as a tethered spinal cord. The problem manifested itself during high school, and Stanley has had three surgeries to correct it — but they only made the problem worse, he said recently.

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NIH Funding for Spinal Muscular Atrophy Research Up 60% Since 2008

February 23, 2011

NIH Funding for Spinal Muscular Atrophy Research Up 60% Since 2008

Press Release | February 23, 2011

The National Institutes of Health (NIH), the federal government’s medical research agency, released its most recent estimate of funding for disease categories which indicates that its base funding levels for SMA-related research has increased from $10 million in fiscal year 2008 to $16 million in fiscal year 2010.  An additional $3 million in one-time funding was provided to SMA-related projects in fiscal years 2009 and 2010, respectively, through the American Recovery and Reinvestment Act (ARRA).

Some of this  increase in federal resources devoted to SMA-related research is the result of the success of a two-pronged, long-term strategy of Families of SMA to provide seed funding for critical drug discovery programs in order to leverage federal (and private) resources, and to raise awareness of SMA and SMA-related research among federal policymakers through advocacy and grassroots efforts.

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In a Perfect World: A Law to Cure Paralysis — Paid for by Those Who May Cause It!

February 2, 2011

In a Perfect World: A Law to Cure Paralysis — Paid for by Those Who May Cause It!

The Huffington Post | February 2, 2011 | By Don C. Reed

A two-year-old runs out on a neighborhood street — just as a reckless driver roars around the corner.

A screech of brakes, a scream of fright — but a hand snatches the toddler back, just in time. The parent hugs and soothes the terrified child, the car disappears in the distance… and its driver gets away with a crime that could have ruined a life, and a family.

In a perfect world, a siren would sound, a red gumball would start blinking, and the neighborhood would applaud the driver’s capture, and the impounding of the car.

We do not live in a perfect world. But we can and should hold drivers accountable for their vehicular misbehavior, especially when it endangers the public.

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Family of disabled girl back mum’s condemnation of government

January 23, 2011

Family of disabled girl back mum’s condemnation of government

Sunday Sun | January 23, 2011 | By Helen Rae

THE family of a disabled girl have backed a mother who condemned Prime Minister David Cameron for failing families who need respite care.

Earlier this week, exhausted Riven Vincent said she may be forced to put her daughter, Holly, into full-time care after being denied additional support from social services and she called upon the Government to provide more funding to help those with disabled children.

The six-year-old has severe quadriplegic cerebral palsy and epilepsy and requires round-the-clock care.But her parents receive just six hours’ respite a week and, in a desperate plea posted on the parenting website Mumsnet, Ms Vincent announced she had asked social services to take Holly into care.

Parents Alison and Clint Law, of Wallsend, North Tyneside, know all too well the difficulties of looking after a disabled child 24 hours a day, seven days a week, and agreed with Ms Vincent the Government should do more.

Their wheelchair-bound daughter, Ellen, nine, has spinal muscular Atrophy Type II, meaning she has no control over her lower limbs, suffers from chest infections and requires a special diet.

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Capps Votes Against Repeal of Health Insurance Reform

January 20, 2011

Capps Votes Against Repeal of Health Insurance Reform

Santa Barbara Independent | January 19, 2011

On January 19, Rep. Lois Capps (D-CA) voted against legislation to repeal the Affordable Care Act, which was enacted into law last March. The Patients’ Rights Repeal Act was approved by a vote of 245-189. All House Republicans voted “Yes” to repeal this life-saving law.

“The health insurance reform law is already benefitting families, seniors and small businesses up and down the Central Coast and across the country,” said Capps. “This effort to repeal the whole law, even as it’s still being implemented, is shortsighted and a political distraction. We should keep our focus on getting our economy back on track, addressing the housing crisis and creating jobs.”

During the floor debate, Capps told the story of one of her constituents, Gwendolyn Strong, to illustrate the life-changing impact of the implementation of the critical consumer protections included in the Affordable Care Act. Bill and Victoria Strong’s daughter Gwendolyn was diagnosed with Spinal Muscular Atrophy (SMA) at six months old. Before reform her parents lived in fear that she would reach her lifetime coverage limit and then be denied insurance due to her pre-existing condition. The elimination of lifetime caps has given the Strongs peace of mind—they are guaranteed Gwendolyn will receive the care she needs and their family is protected from bankruptcy. But repeal would put this family back at risk for losing their coverage and potential bankruptcy.

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Lives ‘will be lost and families torn apart’ if Northern Ireland loses muscle disease advisor

January 17, 2011

Lives ‘will be lost and families torn apart’ if Northern Ireland loses muscle disease advisor

Belfast Telegraph | January 17, 2011 | By Lisa Smyth

A woman with a life-threatening muscle disease has warned lives will be lost if Northern Ireland loses its only specialist care advisor as the NHS struggles to save money.

Northern Ireland will become the only part of the UK without a specialist care advisor for people with degenerative muscle conditions.

Funding runs out for the post at the end of March and so far health bosses have refused to say whether more money will be made available to guarantee the future of the position, which costs the health service just £50,000 a year.

Michaela Hollywood (20) has Spinal Muscular Atrophy and said the specialist care advisor has provided support and assistance during some of the most difficult periods of her life.

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New rules restrict use of genetic information by employer

January 16, 2011

New rules restrict use of genetic information by employer

The Register-Guard | January 16, 2011 | By Jeff Burgess

GINA, the federal Genetic Information Nondiscrimination Act, went into effect over a year ago, but the EEOC just recently issued final regulations that became effective Jan. 10.

The rules explain the prohibitions on acquiring and using genetic information in employment. They also define genetic information, provide model language for employers to use when requesting medical information, and detail narrow exceptions to the prohibitions of the law.

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