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Advocacy Update

CHP Bill Passes in Assembly - Senate still Pending.

The bill mandating coverage for outpatient clotting factor under Child Health Plus, sponsored by Assembly Member Micah Kellner, has passed in the Assembly. New York is the only state where the Child Health Insurance Program does not include this important coverage. The legislation is now in the rules committee of the Senate. Although the session has ended, there is a possibility that the Legislature will reconvene for a special session to deal with unresolved issues so there may still be a chance for passage this year. PLEASE take a few minutes right now to call your Senator and ask them to do the right thing!

Find your Senator's contact information by clicking here:


Then call them with this simple message:

Hello my name is ______. We are New Yorkers affected by bleeding disorders. I want to strongly urge Senator ______ to help bring S.3865-A  to a floor vote and pass it so that Child Health Plus will cover the treatment that children with hemophilia need.
This is a critical moment for the bleeding disorders community in New York State. Please help us by getting to a phone and making these calls RIGHT NOW!
Thank you in advance for speaking out on behalf of New Yorkers affected by bleeding disorders and for your ongoing support of NYCHC.


Tell Your Story: NHF's Washington Days Announced for March 7-9, 2012

Washington Days, NHF’s annual grassroots advocacy day on Capitol Hill, will take place from Wednesday, March 7 until Friday, March 9th, 2012. This is your opportunity to learn about key legislative issues affecting the bleeding disorders community. More importantly, it’s a chance for you to tell your own story to our elected representatives and their staff members, helping them understand your genuine needs and concerns. Past Washington Days participants have described it as an empowering experience they will never forget. It's important that we send a strong group from across the New York City area to make sure our voice is heard!

NHF Washington Days training is being held at the Crystal Gateway Marriott hotel in Arlington, VA. The program will begin Wednesday evening with a review of the issues followed by a networking reception. On Thursday we hit the Hill for a full day of face-to-face meetings with members of Congress and their staff. Afterwards there will be a dinner and special presentation on "Advancing Research Through Genotyping." On Friday, there will be a state advocacy training designed to explore state-specific issues and improve our effectiveness on the state level. 

NHF has secured a discounted room rate of $179 (single or double) plus applicable taxes at the Crystal Gateway Marriott hotel. That rate is only available until February 1st, after which rates may increase if rooms are still available. Before making your room reservation, you must register for the program by CLICKING HERE.

Some funding is available for families and individuals who would like to attend but find the hotel and transportation costs prohibitive. For more information about this opportunity, please send an email to glenn.mones@nyhemophilia.org. Please submit requests for funding no later than Thursday, January 26th. Every effort will be made to accommodate as many requests as possible.

For more information about NHF’s Washington Days, please visit the NHF website at  www.hemophilia.org.

posted January 8, 2012

HHS Issues Bulletin on State Implementation of Healthcare Reform

On December 16, 2011 the Department of Health and Human Services (HHS) released a bulletin outlining proposed policies on how states will implement aspects of healthcare reform, also known as the Affordable Care Act.  This important Federal legislation is designed to ensure that all Americans will have access to quality, affordable health insurance. Some provisions of the legislation have already taken effect and the rest are scheduled to be in place by 2014. The new bulletin addresses the issue of what states will need to do to ensure that insurance plans that will be offered to consumers and small business will cover “essential health benefits.” HHS had already established a list of broad essential benefit categories which include prescription drugs, physician services, emergency services, mental health services, chronic disease management and a number of others. In this latest communication, HHS makes proposals about how this will be implemented at the state level. Specifically, they are intending to ask states to designate an existing plan as the “benchmark” whose benefits all other plans must meet at a minimum. States would have the option of selecting as the benchmark either one of the three largest small group plans in the state, one of the three largest state employee health plans, one of the three largest federal employee health plan options, or the largest HMO plan offered in the state’s commercial market. If a plan selected as the benchmark does not already cover all of the broad categories on the essential benefits list, these categories will have to be added to the plan and ultimately to all other plans.

Although it is a positive sign to see this aspect of healthcare reform moving forward, the fact that states will retain so much flexibility with regard to the plans that will be offered may be a cause for concern. One of the hopes for healthcare reform has been a “leveling of the playing field” across the states so that there would no longer be “good states” and “bad states” for healthcare. This has always been a particular concern for people affected by bleeding disorders and anyone dealing with chronic healthcare issues. Although the proposal and others that have preceded it take significant steps in the right direction, it seems entirely possible that at least some disparities may remain.

It is important to note that the bulletin addresses only the services and items covered by a health plan, not the cost sharing, such as deductibles, copayments, and coinsurance.  HHS reports that the cost-sharing features will be addressed in future bulletins.

NYCHC is working closely with our coalition partners across the state as well as our national organizations to determine all of the potential implications of the proposal and the best possible response. We will continue to keep the community informed as more information becomes available.
Additional information on the bulletin and related topics is available on the following government websites:

For the essential health benefits bulletin, visit: http://cciio.cms.gov/resources/regulations/index.html#hie

For a fact sheet on the essential health benefits bulletin, visit: http://www.healthcare.gov/news/factsheets/2011/12/essential-health-benefits12162011a.html

For a summary of individual market coverage as it relates to essential health benefits, visit: http://aspe.hhs.gov/health/reports/2011/IndividualMarket/ib.shtml

For information comparing benefits in small group products and state and Federal employee plans, visit: http://aspe.hhs.gov/health/reports/2011/MarketComparison/rb.shtml

NYCHC Addresses HHS on Essential Health Benefits

NYCHC Executive Director Glenn Mones had an opportunity to present comments to the U.S. Department of Health and Human Services (HHS) at a listening session on November 14th in New York City. The session was part of a series of meetings around the country designed to solicit public comments on what essential health benefits must be covered under the new insurance plans that will be offered under the Affordable Care Act (ACA). These new plans will be offered through insurance exchanges that will be established in 2014. The goal is to offer affordable insurance options to people who are currently uninsured or under-insured. These include employees of small businesses who are not currently offered coverage through work.

The NYCHC comments included basic background information about bleeding disorders as well as some specific information about the importance of accessing appropriate treatment without unreasonable costs.

Efforts to Improve Access to Care Continue in Albany and Across the State

NYCHC advocates meet with
New York State
Assemblyman Micah Kellner in his office
during the annual Albany Days earlier this year..
On September 14th, representatives of the New York City Hemophilia Chapter, NHF and several other hemophilia organizations from across New York State met in Albany with representatives of specialty pharmacies and clotting factor manufacturers to discuss how to respond to ongoing changes to Medicaid. Of particular concern was whether or not the level of reimbursement would remain high enough to ensure that consumers would have uninterrupted access to factor from a variety of providers. The participants decided that it was important to survey the pharmacies in order to get a better idea of what it costs to properly handle and distribute clotting factor over and above the cost of acquiring the products from the manufacturers. By documenting this information, it will then be possible to demonstrate to the relevant government agencies what level of reimbursement is adequate.
The group also discussed the possibility that hemophilia care under New York State Medicaid might eventually be moved into managed care even though it is currently exempt and remains fee-for-service. The concern is that in the case of hemophilia which is very specialized, managed care could lead to suboptimal care and inadequate service with real health consequences for people in the community. The meeting participants concluded that it was important to try to keep hemophilia care in the fee-for-service model on a permanent basis.

On September 15th, the representatives of the community organizations met to discuss state legislative strategy for the coming year. Two years ago, we achieved an important victory when the State passed legislation prohibiting insurance companies from placing certain drugs in a “Tier IV category.” Tier IV drugs, which are usually injectables and other biologics like factor, require a copayment that is a percentage of the drug’s actual cost rather than a flat fee like most other drugs. Without this law, copayments for clotting fact could have soared to much higher levels, creating a significant additional burden for community members. Last year, the community worked with friends in the legislature to get Child Health Plus and other critical state programs to start covering outpatient clotting factor. These programs are designed to ensure that individuals and families who don’t qualify for Medicaid but don’t have access to other insurance can get coverage at an affordable rate. New York is the only state where CHIP (Children’s Health Insurance Program) doesn’t cover outpatient factor. Although significant progress was made in advancing the legislation, we were unable to get it to the floor for a final vote by the time the session ended. The meeting participants decided that it was important to pursue the legislation again this year and that by building on our earlier progress, we’d have a real chance of success during the new session.
The group also discussed the difficulty of accessing skilled nursing facilities such as nursing homes and rehabs. In many cases, these facilities do not want to admit individuals with bleeding disorders because they are afraid they won’t get adequately reimbursed for clotting factor. At the same time, they often do not allow factor to be brought in from the outside. The participants committed to working with Medicare and other government agencies to find an effective solution to this growing problem.

Outpatient Clotting Factor Bill Shelved for This Year but Positive Outcomes Abound

As the New York State Legislature takes its final lap for the season, the New York City Hemophilia Chapter (NYCHC) has received news that no further action will be taken on our outpatient factor legislation this year. The decision has been attributed to remaining uncertainties around the actual cost of the legislation. However, there is still cause for celebration as the process yielded many positive results; the Chapter and our fellow bleeding disorders associations across the state have a lot to be proud of.

Here’s a brief recap of some of our major initiatives and outcomes:

With regard to reimbursement for outpatient clotting factor, we succeeded in having first time legislation introduced in both houses mandating coverage under Child Health Plus and other specific state programs. The legislation passed out of both Health Committees without any opposition, which is itself a significant feat. Furthermore, the Department of Health agreed in the process that regardless of the outcome of the legislation, they will pay for outpatient factor as a Medicaid fee-for-service benefit under Family Health Plus. We also gained some new allies in the Legislature on both sides of the aisle that we can call on again in the future.

With regard to the Medicaid Redesign Team (MRT) proposals, we succeeded in getting important exclusions from two troublesome provisions. First, the Legislature rejected MRT proposal 15 to eliminate “prescriber prevails” for individuals in fee-for-service plans. This provision would have severely limited the ability of a physician to decide, in consultation with the consumer, what treatment is best for that individual. Furthermore, the Department of Health agreed to delay implementation of MRT proposal 11 which would have put clotting factor under Medicaid managed care, putting into question the quality of service to the consumer. For the time being, coverage for clotting factor products will remain a fee-for-service benefit.

This is not the end of the process. NYCHC will continue to work in coalition with fellow bleeding disorder associations and other allies to ensure that every New Yorker and every individual has unimpeded access to the highest quality healthcare. We are counting on our members and supporters to stand with us as we continue our fight. NYCHC will continue to provide the community with important news and information on these subjects as it becomes available.