LymphActivist's Site
Dedicated to Lymphedema Patients and the Therapists Who Treat Them
LymphActivist's Site
Dedicated to Lymphedema Patients and the Therapists Who Treat Them
LymphActivist's Site
Dedicated to Lymphedema Patients and the Therapists Who Treat Them
EIN Presswire Press Release
New York Governor Andrew Cuomo signs groundbreaking LE patient education bill, authored by LE&RN
Championed by NYS Assemblymember Linda B. Rosenthal and NYS Senator Martin J. Golden
NEW YORK, NY, USA, October 2, 2018 /EINPresswire.com/ -- New York Governor Andrew Cuomo signed a lymphedema (LE) patient education bill early this morning. The new law mandates that the New York State Department of Health shall design an informational packet about lymphedema to be given to patients at high risk of developing lymphedema.
The bill was authored by the Lymphatic Education & Research Network (LE&RN) and was spearheaded by NYS Assemblymember Linda B. Rosenthal, who sponsored the bill in the New York State Assembly. NYS Senator Martin J. Golden sponsored the bill in the Senate. The bill also had a champion and advocate in LE&RN Spokesperson Kathy Bates.
"I am deeply grateful to Governor Andrew Cuomo and the New York State Legislature for supporting this bill,” said Ms. Bates. “If not for Bill Repicci and LE&RN’s tireless efforts on behalf of the ten million people suffering from lymphedema in America, none of this would be possible. It is their stories that inspire us and propel us closer to a cure.”
According to LE&RN, one of the obstacles to LE becoming a national priority has been its low profile among medical practitioners. With medical schools spending little time on the study of lymphatics, doctors are often slow or unable to diagnose LE. As a result, people at risk for the disease are often caught off-guard by the onset of symptoms and lose valuable time in pursuing a treatment regimen. This pioneering bill is a dramatic step forward for patient education in general and is particularly important to the LE community, in which stories of delayed diagnosis and lack of information are all too common. LE&RN has already begun working with LE&RN Chapters across the nation to ensure that all patients receive the same access to information that is now guaranteed for those in New York State.
"For the hundreds of thousands of New Yorkers and the estimated 10 million Americans who live with the chronic, incurable disease of lymphedema, this first-in-the-nation bill is nothing short of momentous,” said LE&RN President and CEO William Repicci, shortly after the bill was signed by the governor. “This bill empowers people who are at risk of getting this disease, which will lead to early diagnosis, enhanced quality of life, and a reduction of ongoing medical complications."
About LE&RN
Founded in 1998, the Lymphatic Education & Research Network (formerly LRF) is a 501(c)(3) not-for profit organization whose mission is to fight lymphatic disease and lymphedema through education, research and advocacy. LE&RN provides valuable education resources for the millions of people who suffer from lymphedema and lymphatic disease. LE&RN fosters and supports research that can deepen the medical community's understanding of the lymphatic system. For more information about lymphatic disease or the Lymphatic Education & Research Network, please visit www.LymphaticNetwork.org or call (516) 625-9675.
Laura Farrell
Lymphatic Education & Research Network
(516) 625-9675
Thrilled that my first-in-the-nation legislation to raise awareness about lymphedema, a little known and debilitating disease that afflicts nearly 10 million Americans, resulting in extreme and painful swelling of the extremities, was signed into law today. Lymphedema is a chronic disease, caused by damage to the lymphatic system, most commonly caused by removal of lymph nodes during cancer surgery. The law will require hospitals to provide patients at high risk of developing lymphedema with information about the disease, as well as treatment options.
For New Yorkers who have suffered in silence with painful swelling, often without receiving a diagnosis, today represents a watershed moment. The hope is that lymphedema will no longer be ignored, and at-risk patients will now have vital information to discuss with their medical treatment providers. For far too long, lymphedema has been relegated to the edges of obscurity, which places sufferers at a distinct disadvantage. My new law signals the first day of a new beginning.
A full 30% of all breast cancer survivors develop lymphedema after cancer treatment, which can traumatize the lymphatic system, yet most are never made aware of this risk. Because lymphedema is so misunderstood and underdiagnosed, research into newer, more effective treatments and an eventual cure lag behind other well-known but far less common diseases. In addition to physical therapy and exercise, the disease, which can be incredibly painful and debilitating, is treated primarily through elastic bandages and compression stockings. Lymphedema can be hereditary, but onset commonly occurs after a surgical procedure, infection, radiation treatment or other physical trauma.
The newly passed law defines parameters for patients at high risk of developing lymphedema, and requires general hospitals to distribute information packets, to be developed by the NYS Department of Health, to any such patient.
So many sufferers win their battles with cancer only to begin a new battle, this time with a disease that doctors are not familiar with. Lymphedema can feel like a one-two punch, but arming patients and medical professionals alike with information about the disease is one of the first steps toward effective management.
Each year from 2014 through 2017, Assemblymember Linda B. Rosenthal was able to help secure $200,000 in combined state funding from the legislature for lymphatic education and awareness programming. In 2018 she was able to secure $250,000.
A big thank you to William Repicci, Executive Director at Lymphatic Education & Research Network for his tireless advocacy on behalf of Lymphedema sufferers.
Thank you Assemblymember Rosenthal for your unwavering support of the lymphedema patients of New York State. I must correct, however, your statement that this is the first-in-the-nation legislation to raise awareness of lymphedema. Assembly Bill A05320A Alan Maisel/ S00629A Charles Fuschillo, originally introduced in 2007, was passed by the NYS Legislature on July 19, 2010 and signed into law by Governor Patterson on July 30, 2010. This law amends the New York State Public Health Law to add children under the age of 21 who are disabled from lymphedema, lipodema, lymphatic disease and vascular/lymphatic malformations to the definition of “children with physical disabilities”, thereby requiring the State to provide medical service for their treatment and rehabilitation. Medical service includes “such diagnostic, therapeutic, and rehabilitative care by medical and paramedical personnel, including hospital and related care, and drugs, prostheses, appliances, equipment and devices as necessary.”[PHL Article 25,Title 5, §2580-4]
The new law also adds the requirement for the Department of Health to provide information on lymphatic disease as well as lymphedema to the health care and wellness education and outreach program. The new law specifically requires electronic links from the Department’s web sites to the NLN and LRF web sites. [PHL Article 2, Title 1, §207(c)]
A publication “Have You Had Cancer Treatment” was printed with the then current consumer information on risk factors for lymphedema, suggestions for lessening the severity of the symptoms, and treatment options. It also includes a list of resource organizations to be consulted for further help. The brochure was printed up and distributed in many physicians’ offices. This brochure is available on the New York State Department of Health web site at https://www.health.ny.gov/publications/0399.pdf It requires minor updates to reflect lymphedema knowledge gained in the last 10 years, and the inclusion of contact information for LE&RN, which did not exist at the time of development of the original brochure.
Thank you Assemblymember Rosenthal for your help in the passage of the patient information bill A08819-B. We have now provided the patient at high risk of lymphedema information on the medical condition they are likely to develop during their surviving years. Unfortunately, they will find that treatment is not widely available, and is not widely covered by healthcare insurers.
The knowledge they have gained will be of very little use in the management of their condition when their lymphedema treatment is severely limited by the rules of physical therapy for acute trauma, and the compression bandages, garments, devices and supplies are not covered by insurance. The recent survey of healthcare insurers in the State of Maryland disclosed gaping holes in lymphedema coverage despite insurance company assurances that lymphedema was covered. This led to the passage of the Maryland Health Insurance Coverage for Lymphedema Diagnosis, Evaluation, and Treatment Act http://www.lymphactivist.org/maryland-2018-HB847-Chaptered.pdf , to take effect January 1, 2019. Maryland joins Virginia, North Carolina, California, and Vermont in providing full treatment or compression garment coverage to lymphedema patients, regardless of cause.
Fears by the insurers that the cost of lymphedema treatment coverage would be excessive or uncontrolled have proven to be unsupported in Virginia, where a lymphedema treatment mandate has been in effect since January 1, 2004 https://healtheconomicsreview.biomedcentral.com/articles/10.1186/s13561-016-0117-3 Reported data for 2004–2013, representing 80 % of the Virginia healthcare insurance market, contains claims and utilization data and claims-based estimates of the premium impact of its lymphedema mandate. The average actual annual lymphedema claim cost was $1.59 per individual contract and $3.24 per group contract for the years reported, representing 0.053 and 0.089 % of average total claims. The estimated premium impact ranged 0.00–0.64 % of total average premium for all mandated coverage contracts.
But most importantly the Virginia data confirmed previous clinical data that the treatment of lymphedema results in lower medical costs and fewer hospitalizations. This is a potent model for reduction in healthcare costs while improving the quality of care for cancer survivors and others suffering with this chronic progressive condition.
Let me remind you that you have already sponsored a lymphedema treatment insurance bill A02271 which has been languishing in the Insurance Committee for over 10 years. This bill would provide real help to patients who do develop lymphedema, and who have been informed of its signs and symptoms by your education bill. Please, do what you can to complete your mission to help lymphedema patients of New York State.
I stand ready to help in any way I can.
S T A T E O F N E W Y O R K
Introduced by M. of A. L. ROSENTHAL -- read once and referred to the Committee on Health -- recommitted to the Committee on Health in accordance with Assembly Rule 3, sec. 2 -- committee discharged, bill amended, ordered reprinted as amended and recommitted to said committee -- again reported from said committee with amendments, ordered reprinted as amended and recommitted to said committee
AN ACT to amend the public health law, in relation to the distribution of information to patients at high risk of developing lymphedema
THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEMBLY, DO ENACT AS FOLLOWS:
Section 1. The public health law is amended by adding a new section 2803-v to read as follows: S 2803-V. LYMPHEDEMA INFORMATION DISTRIBUTION.
1. FOR THE PURPOSES OF THIS SECTION, THE TERM "LYMPHEDEMA" SHALL MEAN AN ACCUMULATION OF FLUID IN THE INTERSTITIAL TISSUE THAT CAUSES SWELLING, MOST OFTEN IN THE ARMS AND/OR LEGS, AND OCCASIONALLY IN OTHER PARTS OF THE BODY, FROM ANY CAUSE.
2. THE COMMISSIONER SHALL DESIGN AN INFORMATIONAL PACKET ABOUT LYMPHEDEMA AND SHALL REQUIRE THAT EVERY GENERAL HOSPITAL DISTRIBUTE SUCH PACKET TO ALL PATIENTS AT HIGH RISK OF DEVELOPING LYMPHEDEMA. PATIENTS DEEMED HIGH RISK SHALL INCLUDE:
EXPLANATION--
Matter in ITALICS (underscored) is new; matter in brackets [ ] is old law to be omitted.