GHLF brings rare disease advocates together

On April 21-22, 2012, the Global Healthy Living Foundation put together its second roundtable meeting to benefit small rare disease advocacy groups. The goal of the event was to help these groups network and share best practices. The representatives learned from advocates and healthcare professionals working with the rare disease community how to be more successful in identifying and supporting people who have their disease.

Watch this short video and meet the event participants. Listen to them speak about how they learn to be more effective and how we can all work together to lessen the isolation that comes from living with a rare disease all alone.

 
 
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CreakyJoints member advocates for medication access in ND

Brenda Kleinsasser was diagnosed with rheumatoid arthritis (RA) more than 20 years ago. After 11 years, she can administer her Enbrel biologic with ease. But she worries about the day she might be forced to use a different medication.

 
 
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Wanted: Clarity on Biosimilars

UPDATE: Clarity on Biosimilars

The official comment period is over and it's pretty clear that the FDA's February 9th biosimilar draft guidance has sparked resistance among some industry players – specifically over certain definitions and requirements.

On April 17, 2012, the Biosimilars Policy Forum was held. Here is a report on where the industry players stand, including a word from GHLF President Seth Ginsberg.

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What is your Affordable Care Fact?

"What's Your Affordable Care (F)act?"

The Global Healthy Living Foundation (GHLF) is commemorating the two-year anniversary of the enactment of the largest healthcare overhaul legislation in our lifetime: the Patient Protection and Affordable Care Act (PPACA).

Even though we're in the early stages of implementing better healthcare in the U.S., let us know how this healthcare reform has helped improve life for you and your loved ones over these past two years! Tell us why you are healthier because of it, and what kind of person you are able to be thanks to better health. What dreams or goals can you focus on and accomplish without the stress of looming healthcare issues?

Share your story -- your Affordable Care (F)act -- and give countless people the inspiration and hope that you now have, thanks to healthcare reform. Simply upload a short video to describe your personal Affordable Care (F)act. It's easy and we're ready to be inspired by you!

Read more

 
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Why It's Difficult to Obtain Patient Vaccines

Vaccine Difficulty webpage iconYou would think that getting access to vaccinations for your patients would be easy enough. After all, it's a known fact that vaccinations can prevent all sorts of serious illnesses from chicken pox to measles to pneumonia.

All sorts of things can get in the way of giving your patients neccessary vaccinations. Here we explore of few of the issues from delayed government agency approvals to personal belief exemptions to lack of reimbursement for physicians.

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WATCH: Pneumonia Vaccine Caught in CDC Maze

GHLF President Seth Ginsberg sits down with WNBC's Chuck Scarborough to discuss how the CDC's Advisory Committee on Immunization Practices failed to approve FDA-approved pneumonia vaccines for the 42 million Americans aged 50-65.

Take action and sign the request for them to do so

 
 
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WATCH: Join the Patient Advocacy Institute


If you have ever been denied coverage or have been forced to jump through hoops to receive treatment for a chronic disease, consider sharing your story with us so that we can help others. GHLF's Patient Advocacy Institute is vehicle for people who want to use their experiences to educate the public about the need to protect coverage and improve access to care. Let your voice be heard, and share your story with us.

Watch the video below. (0:50)
 

To share your story, click here
 
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WATCH: GHLF Co-Founder at Bio Convention in D.C.


Global Healthy Living Foundation co-founder Seth Ginsberg attended the 2011 Bio International Convention in Washington, D.C., an event bringing together researchers, physicians, and patient advocates to discuss and learn about new advances in healthcare practices and medications.

Watch his interview with Newschannel8 below. (7:00)
 
 
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WATCH: GHLF Co-Founder Appeals to NY Governor


Seth Ginsberg explains what we must do to save Medicaid and Prescription Medication Coverage in New York State.

Watch his interview with NBC4 below. (4:00)
 
 
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GHLF Launches "Fail First Hurts" Website to Combat Step Therapy


Insurance companies often deny covering medication -- medication that you and your doctor have chosen -- because they require you to "fail first" using a different, cheaper drug. But not all drugs are the same. And who gave an insurance bean counter the medical license needed to override your physician's prescription?

"Failing First" using another medication -- also known as "Step Therapy" -- is wrong. And we're here to advocate for you.

To visit FailFirstHurts.org and join the fight, click here.

To view the results of our National Patient Survey on FailFirstHurts.org, click here.
 
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Welcome to the Global Healthy Living Foundation, a 501(c)(3) not-for-profit organization working to improve the quality of life for people with chronic diseases such as arthritis, hypertension, high cholesterol, diabetes, sickle cell disease, depression, psoriasis, cancer and COPD/asthma.

We focus on patients and caregivers, healthcare professionals and innovative patient advocacy.

Our in-person patient events, educational videos, and Web site environments are always culturally and ethnically sensitive, including in-language programs for Hispanic, East Asian and Russian participants, as well as ethnically and culturally harmonious faculty for African-American, Gay Lesbian Bisexual Transgender (GLBT), and selected religious communities.

Our faculty consists of physicians, psychologists, exercise experts, nutritionists, sports coaches, and moderators who often have the chronic disease that is the focus of the event.

We are able to combine chronic illnesses into men's health, women's health, and other broad categories, allowing participants to learn about more than one condition.

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Online Communities

Visit CreakyJoints.org, a popular social networking community (with over 42,000 registered members and counting), brought to you by the GHLF. Check out arthritis news, educational videos, podcasts, events, The Creaky Board support forums, and much more.

 

GHLF is proud to introduce two new social networking sites: CreakyBones.org for osteoporosis, and RedPatch.org for psoriasis.




 

Advocacy In The News

Keeping a Close Eye on Research Misuse

GHLF co-founder Seth Ginsberg warned a statewide New York panel that "comparative effectiveness" research may be incorrectly used to contain healthcare costs, rather than help create improved care for patients.

To read the article on FailFirstHurts.org, click here.

To read about more of our advocacy efforts, click here.