We visited the New York Senate and the Asembly in Albany for Senator John Flanagan’s first day as Senate Leader on May 12, 2015. Senator Flanagan became one of three elected officials who control the New York State budget and the flow of legislation in Albany.

We offer special thanks to Senator Kemp Hannon, Senator John Flanagan, Assemblyman Chad Lupinacci, Assemblyman Andrew Raia, Assemblyman Philip Palmesano, Assemblyman David McDonough and Assemblyman Edward Braunstein for taking the time to consult with us and acting on the important lifesaving needs of those who are waiting for The Gif Of Life. These are elected officials who are knowledgable and who really care about saving lives.

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Casey Introduces Legislation to Boost Organ Donation Research, Increase Awareness

Over 123,000 People in U.S. Awaiting Lifesaving Organ Donation

New Casey Effort Would Intensify Research, Seek to Bolster Existing Awareness Campaigns
Estimated 21 Americans Die Each Day Waiting for an Organ Donation

The Organ Donation Awareness and Promotion Act will authorize $5 million per year for the following programs detailed below, totaling $20 million per year.

Washington DC- Today, U.S. Senator Bob Casey (D-PA) announced that he has introduced new legislation, the Organ Donation Awareness and Promotion Act of 2015, to boost research into organ donation science and to increase awareness.

“There are few acts more selfless and more powerful than the decision to donate a loved one’s organs,” Senator Casey said. “It’s hard to imagine how a family summons the strength to donate a loved one’s organs especially after a tragic event. But over and over again families in our state and across the nation have chosen to give the gift of life to someone in need. This legislation will build on the successful work already being done to invest in research and promote awareness.”

Read it all here.

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New York State Senate Bill S5313

Update: There is a new bill S5313 that has been read in the New York Senate and was officially introduced to the Health committee on 13 May, 2015, the day after we had multiple meetings with the Senate Health Chair Senator Kemp Hannon and his professional legislative team in Albany.

This bill allows New Yorkers age 16 or older who wish to consent to donate the ability to enroll in the New York State Donate Life Registry, while preserving the parent’s ability to give final authorization should the individual who is under 18 be considered for organ, eye or tissue donation.

Senator Kemp Hannon has been a huge help with introducing and supporting legislation that is necessary with respect to organ donation and transplantation in New York State. Senator Hannon sponsored this legislation. It’s now time to find co-sponsors and support. It’s important to note that 44 other states allow individuals under the age of 18 to decide whether or not they would like to enroll in a donor registry. The bill in New York State makes it mandatory that parents make the final determination with regard to whether or not donation would take place until their child was 18.

This bill was built upon last year’s first attempt. LI TRIO was represented at meetings with New York State Legislators and the bill we discussed at our LI TRIO meeting has now been rewritten and introduced. The original bill authorized 15-17 year olds to enroll in New York State’s Donate Life Registry. Thanks to input from LI TRIO members and others, it was suggested that the original bill be amended and/or reintroduced stating that 16-17 year olds would be allowed to enroll in New York State’s Donate Life Registry. Now, there is a new bill that so far has at least (in principle) widespread support.

The status: Referred to Health on 13 May and an important meeting was scheduled for 19 May, 2015.

Read more at: http://litrio.org/legislative/bill-a9203-2013-li-trio-meetings-with-new-york-state-legislators-and-the-amendments/

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New York State Assembly Bill 7282

This bill is about instruction regarding organ donation and authorizes the commissioner of education to make materials providing information on organ donation available to all secondary school pupils in New York State. The bill authorizes instruction on organ donation to be taught to secondary school pupils.

Special thanks to Assemblyman Chad Lupinacci for sponsoring this legislation and for inviting LI TRIO to participate in the New York State Assembly preliminary meetings while Assemblyman Lupinacci stated that he wished to continue the work of our friend, the late Assemblyman Jim Conte.

Status: 1 May, 2015– referred to Education committee

This bill is sponsored by Assemblyman Chad Lupinacci.

As of 18 May, 2015 this bill has the following co-sponsors:

Assemblyman Edward Raia [R]
Assemblyman Philip Palmesano [R]
Assemblyman Edward Braunstein [D]
Assemblyman David McDonough [R]
AssemblymanThomas McKevitt [R]
Assemblyman William Barclay [R]

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Senate- S5101-2015 and Assembly A7431-2015-Fixing Lauen’s Law

The purpose of these two bills is to ensure that when people are applying for a New York State drivers license they complete the section of the application relating to making an anatomical gift which requires them to check either “yes” or “skip this question”.

There was a huge problem with implementation. Now, Section 1 amends section 4310 of the Public Health Law to remove language which allows an application for a driver’s license to be processed even if neither the “yes” or “skip this question” box is checked in the section relating to signing up as a organ donor.

In 2012, Lauren’s Law was named after our friend and LI TRIO member Lauren Shields whose life was saved by a heart transplant. The law passed with the intent to require driver license applicants to actively choose whether they would like to become a registered organ, eye and tissue donor on the New York State Donate Life Registry. However, because the statute (and text on the DMV form) did not invalidate an application that left the organ and tissue donation section blank, it has not resulted in as much of a change in the administrative processes at the Department of Motor Vehicles as had been hoped.

This bill fixes this crucial situation where the intent of the law was not implemented properly. This act will take effect immediately. In other words, after Lauren’s law was passed in the Senate and in the Assembly, signed by the governor and subsequently implemented, there was still a paragraph that stated that the application would not be considered invalid (and not returned to be fixed) if the question regarding organ donation was left blank.

These bills fix the implementation of Lauren’s Law with amendments to public health law and the vehicle and traffic law, in relation to registration of consent to make an anatomical gift.

The Senate bill was sponsored by Senator Hannon with co-sponsors as follows: Senators Carlucci, Gallican and Latimer.

The Assembly version of this bill was referred to the Health committee on 12 May, 2015 while we were in the New York State Assembly. The bill was sponsored by Assemblyman Ortiz with the following co-sponsors: Assemblymans Palmesano, Jaffee, McDonald and Galef. We thank NYAD for their work on this issue.

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*Chronic Kidney Disease Improvement in Research and Treatment Act of 2015
Read more at: http://litrio.org/legislative/chronic-kidney-disease-improvement-in-research-and-treatment-act-of-2015/

This bill extends the time period when a private health insurer, in determining benefits, cannot consider a group health insurance enrollee’s ESRD or entitlement to Medicare coverage due to ESRD and allows individuals with ESRD to be eligible for Medicare Advantage. The bill also allows dialysis facilities to provide kidney disease education services.

“While we’re not stating that a Medicare Advantage plan is better for most or all people with Medicare coverage, it’s prudent for one who is on dialysis to have the choice to choose a Medicare Advantage plan. This bill allows for choice and it’s important to note that Medicare Advantage actually has caps on the amount that those on dialysis are required to pay out of pocket.”- m.s.

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In New York State-The Emergency Services and Surprise Bills law

The Emergency Services and Surprise Bills law, protects those who receive care from out of network physicians while at a participating hospital or ambulatory surgery center and/or emergency services.
The law will be in effect on March 31, 2015 and it will provide protections for those who must go out of network for a specialist or procedure not available within their insurer’s network.

More info at: http://litrio.org/legislative/nys-law-in-effect-march-31-eliminates-surprise-medical-bills/

Hospitals and physicians will face new requirements to comply with the law, including posting prices online for procedures and alerting patients if they will receive care from an out-of-network physician or location; while insurers must update medical directories promptly to reflect who is in and out-of-network.

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The “21st Century Cures Act”
Read more at: http://litrio.org/legislative/the-21st-century-cures-act/

People with kidney failure requiring dialysis account for close to seven percent of Mediare’s budget. The ESRD allows any American with kidney failure to have coverage regardless of age and income. This is great.

However, in recent decades, dialysis principles, technology and techniques have not really changed and people with ESRD have seen only incremental improvements in their dialysis therapy.

The “21st Century Cures initiative” will possibly provide a chance to encourage and increase new research and could develop potential improvements in effective kidney care .

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The Living Donor Protection Act- (reintroduction)
My summary:

Approximately 11% of our heroes; living organ donors giving the gift of life actually find themselves having challenges securing or paying for insurance after the surgery due to discrimination on the part of insurance carriers.

“It’s important to note that FMLA-The Family and Medical Leave Act does not state that living organ donors are able to take time to recover from their donation. Currently, living donors have no assurance and are not promised that their job will be there after their recovery from surgery.” m.s.

The Living Donor Protection Act- HR 5263-Referred to the Subcommittee on Health

This bill will protect living donors from insurance discrimination. The bill also has provisions for the promotion of education with respect to living donation. Additionally, the bill clarifies that living organ donors may use time granted through FMLA-The Family and Medical Leave Act to recover from the surgery.

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Ongoing efforts to support of what we hope will be reintroduced:

*Extend Medicare coverage of immunosuppressive drugs for the life of the kidney transplant. Currently, Medicare coverage ends 36 months post transplant for those under age 65.

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act

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Contact members of Congress and previously discussed sample letters regarding the need for more publicity with respect to living kidney donation:
We have a page that helps a person contact their members of Congress and The White House.
http://litrio.org/legislative/contact-the-u-s-congress-and-the-white-house/

We also have sample letters urge the Division of Transplantation- Health Resources and Services Administration to take note that we recognize the need for more publicity with respect to living kidney donation and this should be a major part of the federal government’s funding for all organ donation education programs, public service announcements and all other publicity. Funding for organ donation awareness has been established pursuant to Title 42 Chapter 6A Subchapter II Part H› § 274f–1.

Read more at: http://litrio.org/legislative/our-support-for-the-allocation-of-funds-for-living-donor-kidney-donation/

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The Hope Act-HIV Organ Policy Equity Act-S. 330 HIV Organ Policy Equity Act
Read more at: http://litrio.org/legislative/the-hope-act-hiv-organ-policy-equity-act-s-330/

The goal of our advocacy and our desire to help show our support for the original bills was to actually overturn a federal ban on organ transplants from HIV-positive donors to HIV-positive recipients. Previously, as per a 1988 amendment to federal law (PL 98-507) regarding organ transplants, performing transplants among HIV positive people was prohibited. The original bill aimed to increase the availability of up to 500 or high quality organs for HIV-positive patients each year. Those deceased donor organs would have otherwise been discarded.

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LI TRIO supported and advocated for the Living Kidney Organ Donation Clarification Act and more details are published at litrio.org. This law now clarifies the legal basis for paired transplants of compatible living donors and recipients. The Charlie W. Norwood Living Organ Donation Act clarifies the law and thereby allows paired kidney donations.

Read more at: http://litrio.org/legislative/law-now-clarifies-the-legal-basis-for-paired-transplants/

-Mike Sosna