Washington Days Reflections

Diane Lee's Experience

(from left to right, Josh Schmidt, Yleana Hughes, Jessica klass,

 Sarah Fey, Jim Durr, and Diane Lee)

March 13, 2013

It was an honor to be selected to attend the National Hemophilia Foundation’s Washington Days on behalf of the Arizona Hemophilia Association this year.  The trip is a chance to really feel part of our democratic system of government while participating in a process advocating for our bleeding community.  This year the NHF had over 300 members attend to meet with the congressional leaders from all around the United States.  This was the largest turn-out for Washington Days they have ever had.  From Arizona, we were able to send a team of six and were able to meet with many of the Representative offices and Senatorial staff from Arizona. 

Our primary focus this year was to lobby for support of HR 460, The Patients’ Access to Treatment Act which would set regulations on insurance companies preventing them from creating a Tier IV prescription drug list in which they could charge a co-insurance of ten to thirty percent.  As you can imagine, this amount of co-insurance would make much of our factor and medications cost prohibitive to us even with insurance.

We also told our personal stories of how the local Hemophilia Treatment Centers (HTC)have benefited our families and requested that any cuts that may be made to budgets either spare or at least be fairly distributed across agencies.  The Center for Disease Control (CDC) and the Maternal and Child Health Bureau (MCHB) are agencies that fund and support our Hemophilia Treatment Centers and they have suffered deep cuts already.  We do not want any further cuts.

 

I was impressed at how receptive and respectful each of the offices were and how each staff member we met with expressed interest and was willing to listen to the constituent’s stories.  Many of the people we met with knew little of how expensive our medications were and I feel our stories helped to impress the importance of preventing the insurance agencies from pricing us out of our treatments. 

The trip was a fantastic opportunity for our Association to speak out and advocate for our community and I would be greatly honored to continue to speak out on behalf of our needs.

 

Together our voices cannot be ignored.  We will be heard!

 

Cindy: Healthcare Reform Update

Healthcare Reform Update

As you may know, the Supreme Court ruled that the Affordable Care Act (aka Obamacare) was constitutional. What that means is that the government can require that individuals have health insurance. However, the Supreme Court also ruled that the states do not have to expand Medicaid from 100% federal poverty level (FPL) to 133% (FPL) as was required in the Affordable Care Act (ACA).

Why does all of this matter to you? The ACA has certain requirements for the states. Arizona has to decide:

I.              What the Essential Health Benefits benchmark plan will be and report to the federal government by September 30th. Governor Brewer chose the State Employee Benefit-United Healthcare EPO with pediatric dental and vision coverage supplemental by the FED-VIP plan as the benchmark plan. It will be important to understand what is included in this plan regarding pharmacy benefits, factor product choices, etc. The plan is about 80 pages long. We are currently assessing it and will make sure to make our voices heard on any concerns for our community.

II.            Whether Arizona will operate its own Health Insurance Exchange or opt to have the federal government run it.  The exchanges are designed to help small businesses provide coverage for their employees and for individuals who are not insured through their employer. On November 28, 2012, Governor Brewer notified the feds that Arizona will not create a state-run health insurance exchange. Arizona is one of 17 other states that have rejected a state-run exchange. The federal government has the authority to step in and create exchanges in states that do not build their own.

III.           Whether to expand Medicaid from 100% FPL to 133% FPL. Children are automatically increased but the area of concern is the childless adult population, of which we have many. The ACA set up its mandates that anyone who falls above 133% FPL has access to the Exchange and will receive subsidies to help defer the costs of premiums and out of pocket costs up to 400% FPL. So if Arizona does not expand, there is potentially a gap between 100% FPL and 133% FPL. It gets even more complicated. ACA says that it will provide 100% federal funding match for newly covered populations. Medicaid does not require coverage of childless adults so these adults would qualify for 100% federal matching.  However, in Arizona through Proposition 204, AHCCCS covered children adults since 2001 up until it was discontinued through attrition starting in July 2011. On November 9, 2012, AHCCCS submitted a waiver amendment to the Center for Medicare and Medicaid Services (CMS), the federal agency that partners with states to administer their Medicaid programs. This amendment allows AHCCCS to maintain its current authority to offer coverage to childless adults at an enhanced federal medical assistance percentage (FMAP), within available resources. Without CMS approval, AHCCCS will no longer have the federal authority to cover childless adults in its program beginning January 1, 2014. If the waiver is not approved, and no other action is taken, AHCCCS will have to eliminate coverage for all remaining childless adults enrolled in AHCCCS beginning January 1, 2014.  Whether Arizona can obtain the enhanced federal match rate is critical in the Governor’s decision making as to whether the State can consider restoring coverage for childless adults. So Arizona has three options regarding the expansion of AHCCCS:

1.    Do nothing. Stay at 100% FPL and continue to reduce childless adult coverage through attrition. This means that the childless adult population will continue to decline as re-enrollment drops off. Childless adults will not be covered.

2.    Keep covering up to 100% FPL and cover childless adults up to 100% FPL

3.    Expand AHCCCS to cover up to 133% FPL

 The deadlines for implementing the Health Insurance Exchanges:

            *By October 2013 the exchanges must be operational and enrolling new   patients.

            *By January 2012 the exchanges must be fully operational and coverage begins

            *By January 2013 the exchanges must be self-sustaining (must pay for     themselves)

There is not deadline for the Medicaid expansion. The amount of federal matching to the states is just decreased each year.

The Arizona Hemophilia Association is closely monitoring the ACA as it is implemented in Arizona. We have been in contact with the governor’s office and have voiced our concerns on several occasions. We will continue to be vigilant in trying to protect product choice, out of pocket costs and provider choice. With the recent developments by the decision to have a federally run exchange, we are not sure whether the chosen benchmark plan for Arizona will still continue to be used as a guide or whether the federal government will implement something different. As soon as we know more, we will let you know. If you would like to join the advocacy committee or have any questions, please let me know. Email me at cindy@hemophiliaz.org.

-Cindy