Finally, Some Answers about Annual Limits!

Health care reform has so many provisions it has been difficult to keep track of all of them. But one we have been watching closely has been the issue of annual limits. While it has been clear that lifetime limits are going away, annual limits remain an issue for many, especially for those patients with chronic illnesses such as hemophilia.

Yesterday President Obama released a fact sheet: The Affordable Care Acts New Patient Bill of Rights. Included in this is a phase out plan of Annual Limits.

Beginning September 23, 2010, health plans will be allowed to set limits no lower than $750,000. In 2011 the minimum limit will be raised to $1.25 million. In 2012, the amount increases to 2 million and in 2014 annual limits will vanish!

This is great news for all, but my question is, why is it so complicated? What will those individuals who reach their annual limit do in the years before 2014? How will they be able to pay ? It seems to make more sense to eliminate both Annual and Lifetime caps now. What are your thoughts?

Exploring Neuropathies and the NAF

Yesterday in Sacramento, Patti and I attended an informative meeting that was hosted by the Neuropathy Action Foundation, (NAF) a nonprofit organization dedicated to supporting patients with neuropathies, or diseases of the nerves, of which there are many types, including Guillain- Barre Syndrome (GBS), Chronic Inflammatory Demyelinating Ployneuropathy (CIDP), Diabetic Neuropathy and others. While GBS affects approximately 1 person in every 100,000, Diabetic Neuropathy affects close to 60% of all Diabetics.

Diagnosis of neuropathies can be difficult and requires a specialist. Symptoms are often mistaken for other disorders and often include pain, numbness, weakness and balance problems. Patients are often told that their symptoms are psychological and begin to feel isolated and depressed.

The NAF actively supports programs that create public and physician awareness of neuropathy, the use of Intravenous Immunoglobulin (IVIG) and other remedies to improve patient care through NAF activities and services. This organization, though it is only 4 years old, has grown significantly and has the ear of legislatures nationally, joining other organizations to educate and empower patients to advocate for them. For more information look at their website, www.neuropathyactionfoundation.com

Health Advocate Trisha Torrey

In the last blog post, I mentioned Trisha Torrey (pictured to the left with Patti and I), a well-known health advocate who traveled from her home in New York to attend our advocacy workshop in Oakland on May 19. Trisha gave an engaging and informative presentation on the many layers of health advocacy, and also told her own story.

In 2004, Trisha was diagnosed with a very rare form of cancer. But Trisha didn’t feel as sick as doctors were telling her she should be, and she had the sneaking suspicion that something wasn’t right. She made the decision to follow her instincts and ask questions, research her condition and demand answers to her questions. Even though she had received the same diagnosis from two independent labs, Trisha pushed for more answers. As it turned out, she did not have cancer at all! It was only through advocating for herself and pushing for a third and final diagnosis from the National Institutes of Health in Washington DC, that Trisha was able to save herself from unnecessary chemo treatments which would have been life threatening to her healthy body.

Since then, her m.o. has been to get people to think for themselves and ask questions. It was a terrifying thought that among the millions of other patients who were dealing with the health care system every day, some could be caught in the same ordeal that she had gone through.

Trisha became a health advocate, and now puts advocates and patients in touch nationwide. She is a sought-after national speaker, newspaper columnist and active blogger. Her blog at about.com says that “Trisha is recognized by patients and professionals alike for her ability to translate the challenges patients face into solutions for improved health care.” Trisha also authored You Bet Your Life! The 10 Mistakes Every Patient Makes.

Her Patient Empowerment blog is a great resource for anyone looking into health advocacy. Trisha also created AdvoConnection.com, a website that brings health advocates and patients together.

We hope to have Trisha back again in the future! Check out her website, blog, Facebook and twitter feeds for more on all that she does!