CA Access News

March 2011

    


In this Issue: Features | Partner Spotlight | Calendar | Welcome New Partners | In the News | Interesting Information | Contact Us

 

Rare Diseases

Record Number of Medicines In Development for Rare Diseases

America's biopharmaceutical research companies are intensifying research into rare diseases, which often are among the most devastating to patients and complex for researchers. A record 460 medicines for rare diseases are in late stages of the pipeline, either in clinical trials or awaiting Food and Drug Administration review, according to a report released today by the Pharmaceutical Research and Manufacturers of America (PhRMA).

The report's release came in advance of Rare Disease Day® on February 28, which is intended to raise awareness of the problem and need for solutions. Of the 7,000 rare diseases, about half afflict children, according to the National Institutes of Health (NIH).

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HHS Rule Would Guide States on Applying for Reform Law Waivers

California Healthline, March 11, 2011

The U.S. Department of Health and Human Services (HHS) released an 84-page proposed rule that would guide states on how they could apply for waivers to key provisions of the health reform law, The Hill's "Healthwatch" reports.

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Partner Spotlight

National Council of La Raza

The National Council of La Raza (NCLR) -- the largest national Hispanic civil rights and advocacy organization in the United States -- works to improve opportunities for Hispanic Americans. Through its network of nearly 300 affiliated community-based organizations, NCLR reaches millions of Hispanics each year in 41 states, Puerto Rico, and the District of Columbia.

To achieve its mission, NCLR conducts applied research, policy analysis, and advocacy, providing a Latino perspective in five key areas -- assets/investments, civil rights/immigration, education, employment and economic status, and health. In addition, it provides capacity-building assistance to its Affiliates who work at the state and local level to advance opportunities for individuals and families.

Web:
www.nclr.org

Calendar

March 22
CPAT Seminars - The National Costs of Obesity
12:00 p.m. - 2:00 p.m.
Chops Steaks, Seafood and Bar
1117 11th St., Sacramento, CA 95814

RSVP Required

RSVP

Please RSVP to Jason at (916) 658-0144 or e-mail jason@perrycom.com

Guest Speaker: Dr. Bill J. Releford, D.P.M. Founder of the Diabetic Foot Institute, Diabetic Amputation Prevention (DAP) Foundation and Black Barbershop Health Outreach Program

CPAT is proud to co-host this event with the American Diabetes Association and Black Barbershop Health Outreach Program



March 29
CPAT Seminars - The National Costs of Obesity
12:00 p.m. - 2:00 p.m.
Los Angeles Area Chamber of Commerce
Bank of America Rooms A, B & C
350 South Bixel Street, Los Angeles, CA 90017

RSVP Required

RSVP

Please RSVP to Arlen Valdivia at (323) 466-3445 or arlen@cerrell.com

Guest Speaker: Dr. Bill J. Releford, D.P.M. Founder of the Diabetic Foot Institute, Diabetic Amputation Prevention (DAP) Foundation and Black Barbershop Health Outreach Program

CPAT is proud to co-host this event with the American Diabetes Association, Black Barbershop Health Outreach Program and the Latino Diabetes Association


Check out our CPAT partner events occurring this month!


Would you like to see your organization's event listed? Contact Jason Dumont at jason@perrycom.com to help advertise your upcoming event.

Welcome New Partners

Join Now

Do you know a group who would be interested in joining CPAT? Please send your referrals to:

Northern California - Contact Jason Dumont at jason@perrycom.com

Southern California - Contact Brandon Stephenson at brandon@cerrell.com

In the News

People Coping With Rare Disease Are Internet Power Users
by Nancy Shute
SHOTS: NPR's Health Blog, March 1, 2011

When people go online searching for health information, they're often also looking for someone who's grappling with the same problem. That's especially true if they're dealing with a rare disease.

The Internet provides a gateway to all kinds of medical facts and also to people who have come by that information the hard way. That's the news from a survey just out from the Pew Internet Project and the California Healthcare Foundation. They found that people dealing with rare diseases are the undisputed power users of health information online.

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Raising awareness on rare diseases -- Researchers, parents urge funding, data
By Colleen Quinn
State House News Service, March 1, 2011

Pharmaceutical executives, medical researchers, and parents of children coping with rare diseases gathered at the State House yesterday to draw attention to those diseases and the need to inform more people about them, including insurance companies.

People with rare diseases often face challenges that those with more common diseases do not, such as delays in diagnoses or missed diagnoses, fewer treatments, and expensive treatment options that often are not covered by insurance, according to advocates who attended the event. Some rare diseases include amyotrophic lateral sclerosis, or Lou Gehrig's disease; cystic fibrosis; and Shwachman-Diamond Syndrome.

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States slash $1.8 billion in mental health funds since 2009
by Sophie Terbush
USA Today, ‎Mar 8, 2011‎

Since 2009, state legislatures have cut $1.8 billion in non-Medicaid mental health spending, according to a report released today by the National Alliance on Mental Illness (NAMI).

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Interesting Information

Cancer Survivors in U.S. Climbed 19% in 2007 From 2001, CDC Says in Report
By Elizabeth Lopatto
Bloomberg, Mar 11, 2011

The number of U.S. cancer survivors increased to 11.7 million in 2007, a 19 percent rise from 2001. About 4.7 million Americans received their cancer diagnosis at least 10 years earlier, according to the Morbidity and Mortality Weekly Report, published by the Atlanta-based Centers for Disease Control and Prevention. People living with breast cancer are the largest group and comprised 22 percent of the patients, followed by those with prostate cancer, representing 19 percent of the survivors.

Advances in early detection and treatment have enabled patients to live longer with the disease and, in some cases, made it curable, the authors of the report wrote. The aging population contributed to the increase in people living with the condition. Forty years ago, the number of cancer survivors was 3 million, according to the CDC report.

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CPAT

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www.caaccess.org

Supported by America's Pharmaceutical Research Companies

 

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