Friday, June 10, 2011

Landmark Healthcare Proxy legislation passes out of New York Senate and Assembly Committees on Health with unanimous votes

June 8, 2011


Donna Appell

Founder and President, Hermansky-Pudlak Syndrome Network, (516) 922-4022, or e-mail:


Landmark Healthcare Proxy legislation passes out of New York Senate and Assembly Committees on Health with unanimous votes

Oyster Bay, N.Y. – New York State Senate Bill 3737, introduced by Sen. Hannon, and Assembly Bill A5036 introduced by Assemblyperson Gottfried passed out of both health committees with a unanimous vote and are now seeking additional co-sponsors. The bill, if passed, would be the first in the country to institute an Enhanced Healthcare Proxy option for individuals.

An Enhanced Healthcare Proxy would empower individuals to appoint a trusted family member or friend to help make medical decisions and be involved in their care without requiring a determination of incapacitation or forcing them to incur the expense of an attorney to find other legal remedies. It does not, at any time, take away decision-making power from the individual.

“We need to embrace a culture of care giving,” says Hermansky-Pudlak Syndrome Network (HPS Network) President Donna Appell, the inspiration behind the legislation. Appell worked as a cardiac ICU nurse for more than 22 years. She is also a caregiver for her 24-year-old daughter Ashley, who has Hermansky-Pudlak Syndrome and her 91-year-old mother who has Parkinson’s Disease.

“It was infuriating to me that I cared for my daughter 365 days a year for 18 years, but the instant she turned 18, we couldn’t speak to our insurance company regarding her bill. We used the services of an attorney to set up a health care guardianship,” says Appell, “Luckily my family could afford the help of an attorney. What about all the families out there who can’t?”

The legislation would benefit multiple groups of citizens.

Today more and more youth with serious and complicated childhood disorders are living into adulthood and entering adult medicine with a multitude of unique health issues. Additionally, as healthcare technology improves, many seniors are living longer and spending more years coping with complex chronic health issues.

Healthcare providers can too easily be exposed to legal liabilities when they try to incorporate a patient’s family member or friend (even with the patient’s permission) into the healthcare decision making process.

“My 91 year old mother uses a mail-away pharmacy. When we have issues, I have to beg to be able to speak on her behalf because she is hard of hearing and unable to speak quickly and has difficulty navigating through multiple phone numbers. This legislation is FREE and it would help our present health care crisis and make life much easier for people to help one another,” says Appell.

To learn more about the Enhanced Healthcare Proxy, visit

The Hermansky-Pudlak Syndrome Network serves patients and families affected by HPS. HPS is a rare form of albinism that causes low vision (usually legal blindness), a bleeding disorder, and in some gene mutations, digestive problems much like Crohn’s disease and/or pulmonary fibrosis, an ultimately fatal lung disease. To learn more about the HPS Network, visit

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