Here you can find the Chapter’s current Calls to Action and find out more as to what you can do to help directly impact legislation in New York State. Help people get the care they need, when they need it!

Updated on June 11th, 2019:

With 7 session days remaining before the State Legislature goes into recess on 6/19, we need to act now to support the following pieces of legislation:

PRIOR AUTHORIZATON BILL:

WHAT A.3038/S.2847 DOES:

  • Prior authorization requests must be answered by plan in 48 hours (24 if patient in jeopardy).
  • Prior Authorization criteria must be based primarily on peer-reviewed medical studies.
  • A prior authorization approval will be good for the life of a prescription (up to one year) and won’t have to be renewed with each visit or refill.
  • Medications cannot be bumped up a tier (unless a generic become available), or made harder to get during the contract year of a health insurance plan.
  • Covers all exchange regulated health insurance plans and Medicaid.

UPDATE:

  • The bill, 3038 (Gottfried) / S.2847 (Breslin)recently passed the Senate Health Committee and is scheduled on the Senate Floor Calendar for a vote. Meanwhile, on the Assembly side, the bill is still in the Assembly Insurance Committee.

CALL TO ACTION:

  • CALL AND EMAIL members of the Assembly Insurance Committee to urge them to pass the bill! You can find below a link to Assembly Insurance Committee member information below.
  • Everyone should also contact Chair K. Cahill & Ranking Member A. Garabino:

TALKING POINTS:

  • Burdensome prior authorization rules delay care and takes time doctors should spend caring for patients.
  • 3038/S.2847 creates common sense limits to help patients get the care they need when they need.
  • 3038/S.2847 is supported by patients & doctors (memo) and has passed the Senate Health Committee.

Act now to support A.3038/S.2847 – every call and email helps!

PHARMACY ACCESS/ANTI-MANDATORY MAIL ORDER BILL:

WHAT A.3043/S.4463 DOES:

If a medical professional determines a patient has a challenge with:

  • Finding a safe, private place to receive deliveries.
  • Communicating over the phone.
  • Medication which requires special storage/handling/monitoring.

The prescriber can request – and the plan should agree – the patient be allowed to a local pharmacy so long as the local pharmacy accepts the same reimbursement as a mail order pharmacy.

Current law allows health plans to impose extra conditions on already in-network New York State licensed and inspected pharmacies for high-cost medications. Example – the pharmacy must be licensed in all 50 states. These extra requirements may prevent the local pharmacy from serving some patients, and forcing the patient to use mail order.

UPDATE:

  • The bill, 3043 (Joyner) / S.4463 (Breslin)recently passed the Assembly and is currently in the Senate Finance Committee.

CALL TO ACTION:

  • CALL AND EMAIL members of the Senate Finance Committee to urge them to pass the bill! You can find below a link to Senate Finance Committee member information below.
  • Everyone should also contact Chair L. Krueger & Ranking Member J. Seward:

TALKING POINTS:

  • Many people in our community struggle with mail order deliveries for the following reasons:
    • In areas such as New York City, if you live far away from where you work, many families cannot take a day a week or even a month off of work to be home during an 8-hour window when their medication might be delivered.
    • Many people need medication that is temperature controlled and if they are unable to be home to pick it up when it is delivered, the medication could lose efficacy and be rendered compromised.
      • This further alters the infusion regiment for the patient, as the individual must want for another delivery.
    • The factor medication that bleeding disorder patients need is very expensive and it can be very problematic to leave unsupervised on a doorstep, where it may be stolen or tampered with.
      • This could further alter the infusion regiment for the patient, as the individual must want for another delivery.

Act now to support A.3043/S.4463 – every call and email helps!

RARE DISEASE ADVISORY COUNCIL BILL:

WHAT A.5762/S.4997 DOES:

A rare disease advisory council would give patients affected by such conditions as bleeding disorders a much-needed voice in creating the thoughtful, informed health care policies they need to stay healthy. Improving care and health outcomes for patients with rare diseases also helps lower the overall cost of their care, which ultimately benefits payers and the public as well.

A.5762/S.4997 creates a platform to foster critical dialogue and engagement across the spectrum of patients, providers, and payers affected by rare diseases. Such engagement is crucial to improving the quality, delivery, and management of care. A New York State recognized Rare Disease Advisory Council would be an important step forward in helping people with complex medical needs live healthier, more productive lives.

UPDATE:

  • We are proud to announce that bill A.5762 (Paulin) / S.4497 (Rivera) that would create a Rare Disease Advisory Council to advise and consult on policy matters relating to rare diseases in New York State has passed both the New York State Senate and Assembly. The next and final step is that Governor Cuomo needs to sign the bill into law.

CALL TO ACTION:

TALKING POINTS:

  • A rare disease advisory council would give patients affected by such conditions as bleeding disorders a much-needed voice in creating the thoughtful, informed health care policies they need to stay healthy.
  • Improving care and health outcomes for patients with rare disease also helps lower the overall cost of their care, which ultimately benefits payers and the public as well.
  • 5762/S.4997 creates a platform to foster critical dialogue and engagement across the spectrum of patients, providers, and payers affected by rare diseases.
  • 5762/S.4997 passed the Senate and the Assembly.

ADDITIONAL CALLS TO ACTION:

  • If you attended Albany Days or Washington Days in 2019, please take a moment to thank the legislators and staffers that you met with, if you haven’t already. Calltheir office or send them an email to thank them for the meeting and to ask for the legislator’s support on our issues. Don’t forget to personalize your message to reflect your discussions!
  • Visit your representatives at their office in-district, introduce yourself, and teach them a little bit about bleeding disorders!
  • Join our Advocacy Committee or become a Regional Advocacy Captain!
  • Help organize a Legislator Breakfast this summer in your area!

Reach out to NYCHC’s Advocacy Coordinator, Lindsay Cox, at lindsay.cox@nyhemophilia.org or through the form below to find out more about how to get involved in advocacy initiatives!

Interested in getting involved in advocacy work? Contact NYCHC's Advocacy Coordinator, Lindsay Cox, here:

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