Supporters of medical food benefits for people with phenylketonuria (PKU) and for acupuncture benefits in New York state are making major efforts to shape the essential health benefits (EHB) package requirements.
Andrea Emanuel, a 26-year-old who has PKU, told federal officials that she is healthy enough to be getting a bachelor's degree in nutrition thanks to access to low-protein foods and access to a special PKU formula.
"Some people are not as lucky as I am," Emanuel said.
Jana Biesanz, a New York state patient who suffers from allergies and migraine headaches, said undergoing acupuncture for about a year has helped her reduce the number of times she must take prescription allergy medications to a couple of times per month, from every day.
"The health benefits of acupuncture are well documented, and should be an option for those interested in an alternative approach to their health care," Biensanz said.
The Centers for Medicare & Medicaid Services (CMS), an arm of the U.S. Department of Health and Human Services (HHS), has included those letters and scores of other comments from medical food benefits supporters and New York state acupuncture benefits supporters in a batch of about 170 comment letters posted on the Web today, shortly before the 11:59 p.m. EST EHB package comment deadline.
CMS officials published the proposed EHB regulations in the Federal Register Nov. 26.
The Patient Protection and Affordable Care Act of 2010 (PPACA) calls for all plans sold through the new PPACA exchanges, or Web-based health insurance supermarkets, to cover the EHB package, to help consumers compare plans on an "apples to apples" basis and to discourage insurers from watering down benefits. Officials at HHS are asking the states to come up with their EHB recommendations, based in part on PPACA EHB requirements and in part on the benefits that typical plans in a state actually offer.
People with PKU have trouble metabolizing the phenylalanine contained in ordinary protein. They need to eat a diet that is low in ordinary protein and use a special formula that can cost about $7,000 to $15,000 per year, according to the Nationa PKU Alliance.
Edward Madden, the father of two sons with PKU, noted in his comment letter that all states require the newborns be screened for PKU.
"There is a mandate to test, but no mandate to treat," Madden said. "Treatment is easy. My sons, age 26 and 17, are doing very well because they have been on diet since birth. The prescribed medical foods and formulas work. But there is a problem. Not everyone can afford the foods and formula. Only 38 states have some sort of program to help those who need it."
Many of the New York state acupuncture benefits letters came from acupuncture providers and acupuncture students.
Pema Chen, an acupuncture student, said the technique helps many.
"Please don't deny people the opportunity to use this medicine," Chen said.
Sally Rappeport, a licensed acupuncturist who practices in Brooklyn, said acupuncture can be useful both as a form of preventive care and in rehabilitation.
"Please include acupuncture in the the New York State Essential Health Benefits," Rappeport said.