Update:
As part of our New York State elected officials’ efforts in 2016, New York State Senate bill S3419C and New York State Assembly bill A.2834D passed the New York State Senate and New York State Assembly following our discussions in Albany.

LI TRIO was part of over 60 patient and provider organizations within New York State and across our nation that supported and advocated for this important legislation.

The bill will finally deal with “fail first” policies. With fail first policies, the patient is supposed to try several less expensive drugs on the formulary instead of a medication that their physician feels he or she prescribed in the patient’s best interest and if they fail, the original prescription for the costlier medication could be approved by the ins®acne company. I provide more details as follows:

If a New Yorker’s physician wants to prescribe a specific medication to help the patient, insurance companies at this time can use a step process where a less expensive medication would have to be tried and if it failed, the physician’s original choice of medication would be available for the patient to receive the pharmacy.

In other words, the physician prescribes a medication in the best interest of the patient, and the patient is told at the pharmacy that it’s not approved by the insurance company and a less expensive medication would be substituted. Only after it’s confirmed that the less expensive medication “failed” will the originally prescribed medication be approved by the insurance company.

This bill was passed by both houses in Albany and although it would not ban all fail first policies, it will provide an effective path to appeal the insurance carrier’s decision and the bill actually requires a more expedited response time so the New Yorker would not be sitting and waiting for the insurance company’s answer.

This bill would take effect on January 1, 2017 and apply to health insurance and health benefit plans delivered, issued for delivery, or renewed after such date.

Call Governor Cuomo 518.474.8390:

New York State passed this bill as did other states such as Indiana, West Virginia, Illinois and Missouri. Please call Governor Cuomo and leave voicemail asking for him to sign this bill before December 31, 2016. Please ask other New Yorkers to call Governor Cuomo at 518.474.8390.

Great news:
Helping to Increase Enrollments- Legislative Efforts and Updates- -Mike Sosna on behalf of LI TRIO

The Senate passed S5313A to help increase enrollments in the state registry by lowering the age of consent for New Yorkers who choose to become a donor. New York State is one of only four states in the nation that requires an individual be 18 or older to enroll in an organ and tissue donor registry. As a result of this situation, young adults are left without a way to enroll in the donor registry. They are unable to register their consent even with parental consent.

Originally, this bill was written to allow fifteen year olds to document their consent and after asking for and receiving a great deal for feedback, our LI TRIO Legislative committee volunteers met with the Legislative team writing the bill and Senator Kemp Hannon, the bill’s sponsor in order to diplomatically suggest that the age of consent be changed to allow young adults 16 and older to enroll in the New York State Donate Life Registry. These efforts were successful and I have to thank our LI TRIO Legislative committee members, our board of directors and most of all Senator Kemp Hannon for giving us so much of his time to allow our volunteers to provide the suggestions that helped remove the controversial part of the original bill. Once this change was made, the amended bill passed the Senate and subsequently passed in the Assembly.

The bill was passed in the Senate as part of a package we worked on for two years with Senator Hannon and Senator Flanagan. The bill was subsequently passed in the Assembly after our trip to Albany where we met with and were guests of Members of the Assembly in the Chamber. We found a great deal of support from Assemblyman Phil Palmesano and he led his colleagues while proclaiming his support for saving lives with Organ Donation and Transplantation.

There was also an announcement about Organ Donation and Transplantation in the Assembly while we were guests of Assemblymen Felix Ortiz. We were asked to stand and Lauren Shields was acknowledged as a very special heart recipient and tireless advocate. Assemblymen Ortiz sponsored the Assembly’s version of the original Senate bill authored by Senator Kemp Hannon where we met with Senator and Hannon and Health Committee Director Kristin Sinclair in Albany. Kristin Sinclair has also been on remote conference calls with LI TRIO and Senator Hannon during appointments in the district. Kristin Sinclair was instrumental in authoring the amendment to the bill.

After the bill passed in the Senate on April 11, 2016, the bill passed in the Assembly on June 9, 2016.

Since there were amendments, the bill was sent back to the Senate for concurrence with respect to any and all amendments. If the bill would have been approved in the Assembly with no changes or amendments whatsoever, it would have been sent to the Governor’s office the way another organ donation bill in the above referenced package was sent to the governor.

One example of the flow of a bill originating in the Senate is as follows:

Once the Senator’s idea is put in a bill and the bill is sponsored, it’s proposed in committee. The next step is to have it brought to calendar and to the floor of the Senate. If the bill passes in the Senate, the bill is sent to the Assembly. If there are any changes whatsoever while the bill is passed in the Assembly, the bill is sent back to the Senate so there is concurrence with respect to any and all amendments.

If the bill would have been approved in the Assembly with no changes or amendments, the would have been immediately sent to the Governor’s office.

Once signed by the Governor’s office, this legislation will give New Yorkers aged 16 or older who wish to consent to donation the ability to enroll in the state’s Donate Life Registry. However, in the event that the young adult may be considered for organ, eye, or tissue donation, the parents of that individual will be notified and given the final authorization for donation to take place.

Another Senate bill (S7003) was sponsored and introduced by Senator Flanagan in order to help increase public awareness of donation, especially among young adults. This bill will help educate high school students about organ, tissue, bone marrow, and blood donation. LI TRIO is in consultation with The New York State Department of Education and they have been supportive since this bill passed in The New York State Senate on April 11, 2016.

In New York, at this time (before passage and implementation of the above referenced S5313A bill) the current age of consent to register as a bone marrow and organ and tissue donor is 18. The age of consent to donate blood is 17 (or 16 with parental consent). This new law will help high school students receive information and be in a better position to make informed decisions when they reach the age of consent. New York State Education officials will develop recommendations for instruction in blood, bone marrow, organ, and tissue donations and this will help save many more lives.

The New York State Senate today recognized April as “National Donate Life” month, passing legislation and a resolution to encourage more New Yorkers to become organ and tissue donors. The bills focus on enhancing public awareness and increasing the number of New Yorkers who sign up to help save lives through organ, tissue, bone marrow, and blood donation.

Senate Majority Leader and Coalition Co-Leader John J. Flanagan said, “No one ever wants to be in a position of needing a life-saving transplant for themselves or someone close to them, but it is critical that we increase the number of donors to give more people a chance to survive. Right at this moment, nearly 10,000 New Yorkers are waiting for that chance. The measures we passed today build upon the Senate’s commitment to raise awareness of organ and tissue donators and would be instrumental to helping more people live long, healthy lives.”

Senate Independent Democratic Conference Leader and Coalition Co-Leader Jeff Klein (D, Bronx/ Westchester) said, “Organ and tissue donation can make the difference between life and death. By taking these legislative steps the New York State Senate hopes to increase participation in organ and tissue donor programs that will undoubtedly save lives.”

Only 25 percent of potential New Yorkers are enrolled in the New York State Donate Life Registry — the second lowest rate in the nation. The Senate has been advocating for additional resources and raising public awareness of the importance of organ and tissue donation through legislation and funding. Earlier this month, the enacted state budget included $1 million to support the New York Alliance for Donation – an increase of $750,000 over last year – as part of the Senate’s ongoing commitment to help New Yorkers in dire need of transplants.

To further increase public awareness of donation, especially among youth, a bill (S7003) sponsored by Senator Flanagan would help educate high school students about organ, tissue, bone marrow, and blood donation. In New York, the current age of consent to register as a bone marrow and organ and tissue donor is 18. The age of consent to donate blood is 17 (or 16 with parental consent). This measure would help high school students make informed decisions when they reach the age of consent by requiring state Education officials to develop recommendations for instruction in blood, bone marrow, organ, and tissue donations and the life saving benefits each provide.

Another measure (S6952A) also sponsored by Senator Hannon would provide an additional opportunity for New Yorkers to document their decision to enroll as an organ and tissue donor. All applicants for health insurance offered through the state health benefit exchange would be provided space during the application process to register for the Donate Life Registry for organ, eye, and tissue donations.

The Senate also passed a bill (S5313A) sponsored by Senator Kemp Hannon (R, Nassau) to help increase the number of organ and tissue donors by lowering the age of consent for New Yorkers who choose to become a donor. New York is one of only four states in the nation that requires an individual be 18 or older to enroll in an organ and tissue donor registry. This leaves young people without a mechanism to document their consent to donate and puts parents in the difficult situation of having to assume what their teenage child would have wanted should a tragedy occur. This legislation will give New Yorkers aged 16 or older who wish to consent to donation the ability to enroll in the state’s Donate Life Registry. However, in the event that the young person may be considered for organ, eye, or tissue donation, the parents of that individual will be notified and given the final authorization for donation to take place.

Senator Hannon, Chairman of the Health Committee, said, “According to the New York Alliance for Donation, 1,700 New Yorkers have been on a waiting list for more than five years. As a state we must and can do more to ensure those in need of organs can be saved through transplantation. The legislation we passed today will help increase the number of people on the Donor Registry and save lives.”

The Senate passed a bill (S6528), sponsored by Senator David Carlucci (D, Rockland/Westchester), that would make “Lauren’s Law” permanent in New York. Lauren’s Law is named after 12-year-old heart transplant survivor Lauren Shields of Stony Point, New York, and makes it easier to choose to be a donor when enrolling for a driver’s license. The law prohibits a driver’s license application from being processed unless the organ donation section is filled out. Applicants have to check a box stating “yes” or “skip this question.” Prior to the law’s enactment, filling out the organ donation section on the application was optional. The law is currently set to expire in October.

Senator Carlucci said, “Allowing Lauren’s Law to sunset would be a major setback, putting the lives of the thousands of men, women, and children who are waiting for a life-saving transplant in jeopardy. This is a setback that we as New Yorkers could not afford. With today’s vote to make Lauren’s Law permanent, this will increase eligible donors and expand our state’s registry. I truly want to thank the namesake for this bill, Lauren Shields, for her tireless advocacy and inspirational message of hope. I am so proud to work with her and advocates across New York who made this possible. Now this bill moves to the Assembly, where I urge my colleagues to support it.”

The Senate also passed legislation (S7013A), sponsored by Senator Susan Serino (R-C-I, Hyde Park), to help medical transport teams operate within their necessary and sensitive time frames. The bill would add human organ delivery vehicles to the list of authorized emergency vehicles in the state.

Senator Serino said, “When lives are on the line, you cannot afford to waste a single second. This common sense legislation will ensure that those who are in line for the organs they need to survive do not have to watch the minutes tick by as their organs sit in traffic. Should this bill become law, it would take effect immediately, so I urge my colleagues in both houses to make it a priority. If you have ever met someone who has been on a wait-list for an organ, then you know they’ve waited long enough.”

www.nysenate.gov
The bills will be sent to the Assembly.