Current Legislation

CT. House Bill No. 5303 (2007)

 

The Circle of Hope Lymphedema Foundation joined with the Coalition for Lymphedema Legislation to present testimony to the Joint House and Senate Committee for Insurance and Real Estate. On the agenda was SB 55 An Act To require health insurance coverage for medical supplies for persons with lymphedema to help such persons with costs of treatment. The Coalition met with Co-Chairman Senator Crisco on Nov 3, 2006 to discuss getting a bill submitted. He is the sponsor of SB 55. Co sponsors are Senator Joan Hartley, Vice Chairman of the Committee and Senator Edith Prague. Representative Vickie Nardello is also sponsoring a bill HB 5303 AN ACT REQUIRING HEALTH INSURANCE COVERAGE FOR THE DIAGNOSIS AND TREATMENT OF LYMPHEDEMA which was combined with SB 55 for testimony. SB 815 was also submitted sponsored by Senator Bill Finch. We are extremely pleased by the enthusiasm to support such legislation from such high ranking members.

 

The hearing was held on Tuesday, January 23, 2007. The coalition had 6 speakers giving testimony. A much appreciated testimony first came from Teresa Younger, Executive Director, Permanent Commission on the Status of Women. However there was one opponent representing the Connecticut Business and Industry Association. Their main theme is "NO MANDATES." We were prepared to counter that position. The Coalition was ready to present their testimony. Batting first was Tricia Warner, OTR/L,CLT-LANA, COHLF Board member. Her topic was Lymphedema 101 which sparked many excellent questions from a group of legislators who needed much education on this topic. Next was Carolyn Lucey, OTR/L,CLT-LANA, Head of the Coalition and COHLF Board member. She presented facts and figures on treatment cost. Again many thoughtful questions were asked and the answers were right on the money. The next speaker was leg patient Ann Trinkus who spoke of her Lymphedema from one who has had treatment and her battles getting reimbursement from insurance providers. Jeanne Tassis, President and Founder of COHLF spoke next of her story dating back to 1983 when she was diagnosed with breast cancer, later developed lymphedema and several cellulitis infections latter in 1994 finally found treatment. She went on to spread awareness and founded the Circle of Hope Lymphedema Foundation. Letters from Dr. David Knight a local surgeon and lymphedema advocate, and the NLN's executive Director Saskia Thiadens were read into the public record. The questions continued: cost of garments, how long do they last, where do you get them, is there a cure, turn around time for re orders. One legislator ask, what would happen if you get a garment that didn't fit properly or you stopped wearing one. Tom Tassis, Vice President COHLF, geared in on winning over the "No Mandate people". His presentation was from a businessman's prospective on costs versus benefits. He presented the cost justification analysis from Bob Weiss, the NLN's Legislative expert, in addition to his own experience with Jeanne. The savings of avoiding hospital stays far outweigh the cost of treatment and garments. Then feeling is with that presentation how could the most conservative member find fault. Our final presenter, Jean Sciadone, a primary leg lymphedema patient, gave a soft spoken but riveting testimony about her severe condition, how treatment saved her and now the insurance companies will not reimburse her. It was a fitting conclusion. We had laid the foundation, built our case with the key ingredients and topped it off the issue at hand.

 

This, we feel was an historic day in Connecticut. We are indebted to the many years of help from Bob Weiss. We want everyone to know about the people who came to testify on behalf of lymphedema legislation. They took time out of their busy days. They reschedule patients, appointments, meeting and their lives to represent all lymphedema patients who can't get proper insurance coverage. And by the end of day felt really, really good about what they had done.

 

The battle is not over. In fact it has just begun. We need to have those who believe in the cause to write, fax or email their representatives to keep the pressure on. Let them know there are more than seven people interested in this condition and how proper treatment, not deterred by the economic roadblocks insurance companies set up, can really save money and reduce health care cost.

The Bill has now been renamed as H.B. No. 5303 - AN ACT REQUIRING HEALTH INSURANCE COVERAGE FOR SUPPLIES FOR TREATMENT OF LYMPHEDEMA

As it now stands H.B. No. 5303 was not passed in the 2006-2007 legislative session. We still have great hope that with every one's support another bill will be voted on and passed in 2008!

Email, call, and write your legislators to educate them in lymphedema awareness and urge them to act in 2008!

Download Sample Letter (In Ms Word) or copy and paste

Lymphedema Legislation Sample Letter – Circle of Hope Lymphedema Foundation, Inc.

Honorable (Senator or Representative's name),

I, ___________________ support and encourage legislation requiring insurance coverage for ALL lymphedemas regardless of source of origin. I encourage you to support patients with lymphedema and support their need to have their lymphedema required supplies covered by insurance companies.  Please support Lymphedema Bill H. B. No. 5303. 

The estimated number of cancer survivors alive in 2005 was 10,454,000 by American Cancer Society statistics. Best conservative estimates found in medical literature of the incidence of lymphedema caused by cancer treatment is approximately 20%, meaning that there will be an estimated 2 million cancer survivors who would benefit from lymphedema treatment. Sixty-one percent of cancer survivors in 2005 are over 65 years of age (NCI estimate), meaning that as many as 1.25 million Medicare beneficiaries who are cancer survivors will require treatment for their lymphedema in 2005. To this burden is added a percentage of survivors of various surgical and radiative procedures and patients who have had coronary artery bypass, hip and knee replacement, head and neck surgery, survivors of repeated cellulitis and lymphangitis episodes and patients with primary lymphedema. From this study you can see how many people, today,  have lymphedema. We need to have treatment, which requires medical supplies that need to be cover by insurance!!

Unfortunately doctors and health care personnel are woefully unaware of the extent of this condition, and the protocols of its medical treatment. Medicare and other health care insurers rarely cover the medical protocols practiced in Europe for over fifty years, and recommended in the U.S. in 1998 . The sad part of all of this is that the majority of patients suffer their swollen limbs in silence, being told by their physicians that there is nothing to be done, and that they are lucky to be alive. American doctors have not been schooled in the lymphatic system and its pathologies, and are for the most part unaware of the treatments that have been used in Europe for the last 50 years. And many of these patients are now on disability and bedridden with a condition that is treatable but not being treated. (Reference patient "Joell" from the San Francisco Bay area featured last February on the Dr. Phil show, who was not being treated for her lymphedema until we brought it to the medical staff's attention.)

This under-diagnosing and under-treating of lymphedema patients costs healthcare providers and healthcare insurers including Medicare untold millions of dollars every year because the untreated lymphedematous limb is greatly at risk for infection (cellulitis and lymphangitis) which comes on in the course of a few hours and requires immediate treatment on an emergency basis. It has been shown that treatment of lymphedema greatly reduces and eliminates the risk of infection.

The numbers of patients needing treatment will continue to increase!  We need your help to make H. B. No. 5303 a reality so lymphedema patients will no longer have to suffer the debilitating affects of the condition known as LYMPHEDEMA but instead they will get the medical treatment and supplies necessary for their treatment covered by insurance!

Thank you for your gift of time and consideration of this matter.

(your name, address, telephone number) 

 

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Circle of Hope Lymphedema Foundation Inc. nonprofit 501(c) (3)
36 Woodcrest Drive
Prospect, Connecticut 06712 U.S.A.

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