By Robert (Bob) Weiss, MS, LE Legislative Advocate
By the time you read this, the New York Senate will either have acted upon an important lymphedema bill or left it to die in committee. This bill S03248B Fuschillo was approved unanimously in the New York Assembly as A05892B Maisel and it has many provisions which fall squarely within the NLN’s mission “to create awareness of lymph edema through education and to promote and support the availability of quality medical treatment for all individuals at risk for or affected by lymphedema”:
• Section 1 adds the requirement for the Health Department to investigate causes, treatment, facilities, and prevention of lymphedema to its existing requirements relating to cancer;
• Section 2 adds reporting of all diagnosed cases of cancer-related lymphedema. Currently there are no reliable and authoritative statistics on the prevalence of lymphedema in New York State. This information is urgently needed by legislators and insurers to understand how large the affected population is;
• Section 3 provides an important breast cancer patient protection (duty to inform) which is currently the law, but which is not generally practiced with respect to information relating to risk of lymphedema for each treatment option;
• Section 4 provides the same protection as Section 3 to the prostate can cer patient, adding duty to inform of risk of lymphedema for each treatment option;
• Section 5 adds primary and second ary lymphedema, lymphatic disease, lipedema, and vascular disease to the existing list of childhood medical conditions in the definition of “children with physical disabilities”;
• Section 6 adds lymphedema and lymphatic diseases to the healthcare and wellness education and outreach program of the NY Department of Health. The NLN has already assisted the NY Health Commissioner with a brochure on lymphedema following breast cancer treatment.
The NLN wrote a letter to Senator Skelos, Chairman of the Senate Rules Committee, urging his efforts to report the bill out of his committee to be voted on by the Senate this legislative session. NLN Medical Advisory Committee member Bonnie Lasinski, whose clinic is in New York, wrote a letter to Senator Skelos, informing him of the importance of the bill to lymphedema patients in New York.
For the score keepers among my readers, on June 19, a sixth Administrative Law Judge made a completely favorable decision on an appeal by a Medicare beneficiary that her compression garment was reasonable and medically necessary in the treatment of her lymphedema, and that the garment was covered by Medicare as a prosthetic device benefit according to §1861(s)(8) of the Social Security Act. One month later another lymphedema patient won her appeal to her Medicare HMO on the same basis. It’s a hard road but we’re making some headway.
NEW YORK ASSEMBLYMAN MAISEL PASSES MEASURE TO RAISE LYMPHEDEMA AWARENESS
Assemblyman Alan Maisel (D – Brooklyn, NY) sponsored legislation to promote lymphedema and lymphatic disease reporting and awareness (A5892-b), which requires healthcare providers to report instances of lymphedema related to cancer treatment in their patients. This legislation also requires the Department of Health to develop a health care and wellness education and outreach program for those seeking information on either primary or secondary lymphedema.
“This bill helps to ensure that when lymphedema is acquired from the life-saving cancer treatment, these instances of disease are also reported to the cancer registry. “This will help raise awareness of the disease and,hopefully, increase the money raised to fund additional research to help find the cause of and cure for lymphatic diseases, lymphedema, and related disorders. This legislation, which is on third reading in the Senate, is just the first step in raising public awareness about lymphedema,” said Maisel.
NLN Medical Advisory Committee member Bonnie Lasinski met with Assemblyman Maisel to thank him on behalf of individuals with lymphedema and the NLN.
Robert "Bob" Weiss, M.S.
NLN LE Legislative Advocate