North Carolina Walk-a-Thon benefits RSD Research

YOU ARE INVITED TO JOIN US!

THE ROWAN COUNTY (NORTH CAROLINA) RSDS WALK-A-THON

SATURDAY, MARCH 4, 2006
DAN NICHOLAS PARK, SALISBURY, NORTH CAROLINA

REGISTRATION: 10:30 AM
WALK-A-THON BEGINS: 11:00 AM
ENJOY FREE LUNCH WITH US FOLLOWING THE WALK-A-THON!

ALL PROCEEDS GO TO THE NATIONAL RSDS ASSOCIATION FOR RESEARCH.

THIS YEAR OUR WALK-A-THON IS NAMED THE DONNA AND JOHN BOGER RSDS WALK-A-THON.

Donna, our president, is affected by RSDS; her husband, John, has Leukemia. John and Donna have been such an inspiration to all of us; they have given us HOPE to live with RSDS.

Suicide Lifeline

National Suicide Prevention Lifeline available

The National Suicide Prevention Lifeline, 800-273-TALK

(888-628-9454 for Spanish) is the only federally funded hotline for suicide prevention and intervention. Call from anywhere at any time to talk with a trained crisis worker who will listen to and assist callers in getting the help they need. For more information, visit: http://www.suicidepreventionlifeline.org/

Medicare - The Doughnut Hole Program

Medicare Rx Companies Developing Plan To Provide Discounted Drugs To Fill 'Doughnut Hole' in Medicare Drug Benefit

[Feb 07, 2006]

A group of seven pharmaceutical companies is working on a plan that would provide discounted prescription drugs to Medicare beneficiaries whose annual drug costs fall into the so-called "doughnut hole," or the gap in coverage under the new Medicare drug benefit, the Wall Street Journal reports. Under the drug benefit, Medicare beneficiaries are responsible for all drug costs between $2,250 and $5,100 in total spending, or between $750 and $3,600 in out-of-pocket costs. An estimated 6.9 million Medicare beneficiaries are expected to reach the doughnut hole in 2006, according to the Kaiser Family Foundation, the Journal reports. According to documents filed on Jan. 12 with the HHS Office of Inspector General, the pharmaceutical companies are joining together to provide discounts of at least 50% on their drugs when qualifying Medicare beneficiaries reach the doughnut hole. The Bridge Rx program, which the companies hope to announce in April and launch in May, would have copayments of at least 15%, the Journal reports. Medicare beneficiaries with annual incomes between $14,000 and $18,620 would qualify for the program, as would beneficiaries who have annual incomes lower than $14,000 and assets that make them ineligible for additional financial help under the drug benefit. The projected budget for the program's first year is $30 million, with projected enrollment in 2006 of more than 500,000 Medicare beneficiaries. Companies that plan to participate in the program include AstraZeneca, Johnson & Johnson, Novartis and Bristol-Myers Squibb.

Concerns
According to the Journal, the federal government has said the program could "run afoul of anti-kickback laws unless properly structured." According to the Journal, the small number of participating companies so far "is a potential problem, because the government worries that companies could use the discounts to steer patients to their drugs." The HHS OIG on Jan. 16 in an informal response to the companies' proposal, which the companies sent to HHS on Jan. 12, raised several issues, including the need to provide uniform discounts for all drugs and safeguards to ensure participants do not switch from less-expensive generic drugs to brand-name medications. In an advisory bulletin issued last fall before the plan was presented, the federal government said the "risk" of a kickback "potentially may be reduced" if large numbers of companies participated in such a program and included all of their drugs. CMS Administrator Mark McClellan said the government has been in discussions about the creation of a doughnut hole program, adding that the HHS OIG has said such a plan would work as long as it includes "a broad range of drugs." The HHS OIG is expected to issue a formal opinion on the program by mid-February.

Comments
"It's uncharted waters, so we don't know what" the HHS OIG's office will decide, an unnamed person familiar with the plan said, adding that it is a "good sign" federal officials are in discussions about such a program. The Bridge Rx coalition is working to persuade other large companies, including generic drug makers, to join the group. Pfizer, GlaxoSmithKline and Merck are some of the drug companies that have not yet joined the program. A spokesperson for GSK said the company "is looking at a number of options in terms of ways in which we might be able to help seniors." A spokesperson for Merck said, "[W]e'd certainly see what comes out of" Bridge Rx's efforts and "always examine our options." A Pfizer spokesperson said the company is reviewing the Bridge Rx plan

(Martinez, Wall Street Journal, 2/7).

Need pledges for RSD/CRPS research!

Mini-marathon runner seeking pledges for Chronic Regional Pain Syndrome research

Lori Camacho, a veteran mini-marathoner with CRPS is participating in the May 6 Indianapolis One America 500 Festival. You may remember Lori and her daughter Cheryl's photo as they crossed the finish line at the 2004 More Marathon in New York in the RSDSA Review.

She is walking the 13.1 course to raise money for CRPS research and is seeking sponsors to pledge a specific amount or per mile.

If you are interested in pledging, please send your pledge to me at:
info@rsds.org

If by chance, you know of someone else who is participating in the mini-marathon, please let us know and we can link them with Lori.

RSDSA Analyzes Results of Internet Survey

In early January, RSDSA Board members and staff met with Srinivasa Raja, MD and Shefali Agarwal, MPH, to discuss the Web-based Epidemiological Survey of Complex Regional Pain Syndrome (CRPS). The survey, conducted by Johns Hopkins School of Medicine and funded by RSDSA, was hosted on RSDSA's website for six months. A total of 1,829 individuals started the survey and 1,362 completed it. The survey results revealed how devastating and intractable CRPS can become.

Some of the findings include:
respondents were overwhelmingly female (84%)
mean duration of disease was between 40 and 58 months
average pain score reported was 7.9 (based on a rating scale of 1 to 10, 10 being the worst imaginable pain) with 35% reporting a pain score of 10!
94% reported that their pain affected their sleep
47% reported thoughts of ending their life and 15% had acted on the impulse (an average of 2 times)
62% of the respondents rated their general health as poor to fair
60% reported being disabled
41% had suffered a work-related injury
16% reported being employed full time; 6% reported being employed part time

The four predominant precipitating events cited were
surgery (30%)
fracture (15%)
sprain (11%)
crush injury (10%)

CRPS was first diagnosed by
an orthopaedic surgeon (32%)
a pain specialist (19%)
a neurologist (15%)
a physical therapist (4%)
Significantly, CRPS was rarely diagnosed by a general practitioner (3%)
or family practitioner (2%)

Currently, we are evaluating ways to present the information to the survey participants, and the medical, legal, governmental, and insurance communities. The research team, led by Dr. Raja, has presented an abstract of the data at the 2005 annual meeting of the American Society of Anesthesiology. Also, we hope to publish the data in a peer-reviewed journal for primary care physicians; only 5% of the participants had their CRPS diagnosed by these practitioners. A shocking statistic - almost 30 percent developed CRPS after surgery - raises a number of questions. How do we best communicate the risk that CRPS is a potential side effect of certain surgeries?

A lot of relevant information was added by the survey respondents in the areas of treatment cost, experiences with workers' compensation companies, and how individuals with CRPS were treated by emergency medicine practitioners. The survey data is a treasure trove of information that we will use to bring greater attention to this devastating syndrome that should be a major public health concern.

http://rsds.org/3/pdf/Modified%20ASA%20poster-RSDSA.pdf

Together EX Access Card

Uninsured may qualify for free Rx savings card in minutes

Patients who lack prescription drug insurance and are not eligible for Medicare can determine in minutes if they qualify for the free Together RX Access Card by calling 800-444-4106 or online at http://www.togetherrxaccess.com/.

Most cardholders save 25% to 40% on more than 275 prescription drugs and products, as well as a range of generics. E-mail amyniles@aol.com to request cards for those who may be eligible