Politics

NIH Estimated MS Funding Declines

Mon, 15 Sep 2008 02:34:19 -0400

Please note the levels of funding expected for MS research in the future. Do you agree that we should be pushing congress, president, etc. to increase the amounts for research as much as possible?

art: I'll take this posting as another opportunity to present my case that we should not just assume that more funding equals better results. I wrote up my thoughts on this a while back, you can read them here.

Michelle Obama's Father Had MS

art — Fri, 22 Aug 2008 14:44:47 -0400

In this article on Michelle Obama it mentions that her father had MS. I did not know that.

Perhaps, if she become first lady, she'll be more active with regard to MS than the Romneys were in the Governer's seat in MA...

MS sufferers getting 'postcode lottery' treatment

art — Fri, 11 Jul 2008 16:33:31 -0400

No country has figured out a healthcare system that works for everyone (or even most people). The US system is seriously broken and detractors are usually proponents of some form of national health system.

Here's a story from the UK about the poor treatment you get from NHS when you have MS and the failure of a five year effort to fix that.

Here's a health plan that works: get really rich and be able to afford the best doctors and hospitals. Now we just need a plan to get really rich.

Mercury Fillings Update

art — Thu, 12 Jun 2008 11:13:21 -0400

The U.S. Food and Drug Administration revised its consumer advice on mercury amalgam fillings in the wake of a settlement in a lawsuit by Moms Against Mercury and other nonprofits against the federal agency.

The FDA Web site now says mercury amalgams "may have neurotoxic effects on the nervous systems of developing children and fetuses." The agency also reopened the comment period until July 28 on a rule designating mercury amalgam as a Class II device with special controls on its use.

Special bonus: the link points to the story being reported in the *Mercury* News :-)

Court says U.S. money discriminates against the visually impaired

Julie Morgenlender — Wed, 21 May 2008 09:32:14 -0400

We reported back in 2006 on the a suit against the U.S. Treasury Department to change money so that the visually impaired can distinguish between different denominations. The U.S. Court of Appeals has just ruled that changes must be made to dollar bills. These changes might include raised markings or differing sizes, but it will be the Treasury Department that decides how to comply with the ruling. It may also appeal the ruling, again.

Co-Pay Increases at a Pharmacy Near You

Mon, 14 Apr 2008 22:20:47 -0400

I have only recently been introduced to drugs such as Copaxone and their seriously high costs ($1900/month) through my fiancee's MS. Luckily enough she only has a co-pay of $40 (while working hourly for $10), however I came across a scary article on the New York Times website today that gives a glimpse into the direction of medication costs in the US. Does society not have an obligation to help those in such great need? Those that are rallying against the higher overall premium because it only benefits a few will get new perspective if they are ever diagnosed with a disease as horrible as MS or Cancer.

Hopefully this sort of thing will be blocked.

Petition: Prevent Discrimination Against Workers with Disabilities

art — Wed, 05 Mar 2008 10:34:45 -0500

In 1990, the Americans with Disabilities Act (ADA) was signed into law with strong bi-partisan support. This act was to be the “emancipation proclamation” for people with disabilities preventing unfair treatment toward people with current, past and perceived disabilities. However, 17 years after the passage of this historic civil rights legislation, the courts have significantly weakened the original provisions of the ADA by narrowing the definition of “disability.”

Sign the petition here.

Government Makes NIH Research Open Access

Scott — Fri, 28 Dec 2007 15:20:19 -0500

Your tax dollars at work. Yea! As this article, states:

President Bush has signed into law the Consolidated Appropriations Act of 2008 (H.R. 2764), which includes a provision directing the National Institutes of Health (NIH) to provide the public with open online access to findings from its funded research. This is the first time the U.S. government has mandated public access to research funded by a major agency.

The provision directs the NIH to change its existing Public Access Policy, implemented as a voluntary measure in 2005, so that participation is required for agency-funded investigators. Researchers will now be required to deposit electronic copies of their peer-reviewed manuscripts into the National Library of Medicine’s online archive, PubMed Central. Full texts of the articles will be publicly available and searchable online in PubMed Central no later than 12 months after publication in a journal.

The actual text can be found in the PDF version of the bill, on Page 815, Section 218.

Man with MS convicted of drug charges granted clemency

hollie — Wed, 03 Oct 2007 11:09:20 -0400

After spending 3 1/2 years in prison for possession of too many painkillers (see previous story), MS sufferer Richard Paey is being set free. He had previously lost an appeal to the Florida Supreme Court and had been denied parole, but the clemency board recommended his release and he was granted a pardon by Governor Charlie Crist.

Report Assails F.D.A. Oversight of Clinical Trials

art — Sat, 29 Sep 2007 09:44:50 -0400

The Food and Drug Administration does very little to ensure the safety of the millions of people who participate in clinical trials, a federal investigator has found.

In a report [released last] Friday, the inspector general of the Department of Health and Human Services, Daniel R. Levinson, said federal health officials did not know how many clinical trials were being conducted, audited fewer than 1 percent of the testing sites and, on the rare occasions when inspectors did appear, generally showed up long after the tests had been completed.