Thursday, March 9, 2017

ACTION ALERT! Access to Healthcare - We Need You!

There is so much going on with access to healthcare both nationally and locally. We want you to get involved in the Advocacy Committee so that we can take action to stay informed and have a voice in the decisions being made. Here is some of what is happening:

Repeal and Replace ‘ObamaCare’– What Does This Mean For All of Us?

Here is What We Know:

On March 6th the Republicans released a plan on how they will repeal and replace the Affordable Care Act. The key measures include:
  • It replaces federal insurance subsidies with a new form of individual tax credits and grants to states.
  • Under new legislation, Americans would no longer be penalized for not having health insurance. But insurers would be allowed to impose a surcharge of 30% for those who have a gap between health plans`
  • It will keep two of the most popular features of the Affordable Care Act:
  • Forbids insurers to deny coverage or charge more to people with preexisting medical conditions
  • People can stay on their parent’s policy until age 26
  • Planned Parenthood will be ineligible for Medicaid reimbursements or federal family planning grants
The PSI Government Relations Alert regarding pending Affordable Care Act (ACA) repeal legislation has been posted on the PSI website at:

The debate, starting in House committees this week, is a remarkable moment in government health-care policy making. The Affordable Care Act, former president Barack Obama’s signature domestic policy achievement passed in 2010 with only Democratic support, ushered in the most significant expansion of insurance coverage since the creation of Medicare and Medicaid as part of President Lyndon B. Johnson’s Great Society programs of the mid-1960s. 

There is no precedent for Congress to reverse a major program of social benefits once it has taken effect and reached millions of Americans.

Regardless of whether you are Republican or Democrat, liberal or conservative, there are provisions in the Affordable Care Act that helped many people with bleeding disorders gain health insurance coverage. This has a significant impact on the lapsed time in getting treatment that can reduce long-term damage and disability.


Medicaid would be converted from its current form of entitlement to anyone eligible into a per capita cap on funding to states, depending on how many people they had enrolled. In states that expanded Medicaid under the ACA, which includes Arizona, the government for now would continue paying for virtually the entire cost of the expansion. Starting in 2020, however, the GOP plan would restrict the government’s generous Medicaid payment — 90 percent of the cost of covering people in the expansion group — only to people who were in the program as of then. States would keep getting that amount of federal help for each of those people as long as they remained eligible, with the idea that most people on Medicaid drop off after a few years.  States would receive a set amount of money from the federal government every year, regardless of the number signed up, which could force Arizona to make difficult choices on what they will cover on Medicaid.  It will essentially shift the burden to the state in terms of managing the risk.

This is particularly concerning in Arizona because the Medicaid Expansion was passed by the Arizona legislature with the caveat that if at any time the federal government gives less than 80% to fund the expansion, Arizona will back out.
Our community should care about Medicaid Expansion because it extended AHCCCS coverage to allow those up to 138% of the federal poverty level to be eligible for AHCCCS. It also extended eligibility to include adults. Many of those who have bleeding disorders are on AHCCCS and this could directly impact many of our members.

Concerns for those with Bleeding Disorders:

  • Lifetime Caps are not fully addressed and could be impacted
  • Continuous Care – there is a provision that that the insurers can charge a 30% surcharge if there is a gap in coverage. This could make healthcare unaffordable for our members
  • If Arizona is only given a set amount for AHCCCS, it could negatively impact how much coverage our members can receive.
  • If the federal government covers less than 80% of the Medicaid Expansion, Arizona will back out. This could jeopardize coverage for many adult members currently on AHCCCS as well as those earning between 133% and 138% federal poverty level. 

Market Stabilization Rule

Additionally there are changes to the Affordable Care Act that will take effect THIS YEAR! Centers for Medicare Medicaid Services has proposed the market stabilization rule that is designed to help stabilize the individual and small group markets on the Healthcare Exchange. This proposed rule would amend standards relating to special enrollment periods, guaranteed availability, and the timing of the annual open enrollment period in the individual market for the 2018 plan year; standards related to network adequacy and essential community providers for qualified health plans; and the rules around actuarial value requirements.

Proposed changes will…

 •  Shorten enrollment period- from 3 months to 6 weeks
 •  Change Special Enrollment- will cause 1-2 month delay in enrollment and may not lower costs to insurance companies.
 •  Require patients to pay debt from previous unpaid premium BEFORE same insurer will cover them.     Currently, patients can back-pay while maintaining coverage.
 •  Create continuous coverage requirements (in place of individual mandate). If insurance gap is longer than 60 days, penalizes people who are uninsured when they try to get insurance. Penalties can include 90 day waiting period or increased premiums.
 •  Lower the number of Essential Community Providers- this will reduce access to health care for low-income, medically underserved communities.
 •  Summary from Health Affairs Summary from CMS (Centers for Medicaid and Medicare Services)

What Is AHA Doing?
  • AHA responded to the proposed Market Stabilization Rule with a public comment.
  • AHA is meeting locally with the governor’s office and AHCCCS representatives to advise of our concerns with the proposed changes
  • AHA is a member of Cover AZ, a coalition to influence public policy on access to healthcare
  • AHA is hosting it annual Legislative Day where we will discuss the changes with our Arizona legislators
  • AHA has started the Action Alerts to keep you informed as we get the changes.
  • AHA sent 10 teens to NHF Washington Days this week to talk with our federal legislators and raise awareness!!
  What Can You Do?
  • Read about the proposed changes to the Affordable Care Act (ACA/Obamacare).
  • Make a Public Comment: Go to
The government is ASKING FOR OUR OPINIONS about how these changes will affect people like us in the bleeding disorders community.

Guidance- Be specific about what changes would impact your life or your family. Describe hardships or how you may be disproportionately affected because of a chronic health issue like a bleeding disorder.
Below is an example letter. Please do not copy it directly, use it as a guide
  • Join the Advocacy Committee at AHA – Meeting on March 27th at 6pm. Please email to RSVP
  • Attend Legislative Day – April 2nd training, April 3 Lunch on the Lawn/Legislative Day. Sign up by email
  • Look for our Action Alerts coming out as the healthcare changes unfold and help us create a voice for all of us!
  • Email and call our Senators and Representatives
Senators: John McCain and Jeff Flake
Representatives:  Tom O’Halleran, Martha McSally, Raul Grijalva, Paul Gosar,
David Schweikert, Ruben Gallego, Trent Franks, Krysten Sinema

Sample Letter:

Since my first son was born 14 years ago, I’ve been a member of the bleeding disorders community. Two of my sons have severe hemophilia and require expensive life-saving medication several times a week to maintain their health. Because I have children with expensive chronic health conditions, I know how important it is to have high-quality, affordable health care.

I also volunteer in the bleeding disorders community and have seen that a bleeding disorder like hemophilia can affect a person’s entire life. One bleed can cause permanent damage, chronic pain, disability, and even death.

Therefore, I want to make my voice heard regarding the proposed Marketplace Stabilization rules.

1. By shortening the open enrollment time, people who need coverage may not be able to get it. The process for enrollment can be lengthy and for many who are working multiple jobs having a shorter window, especially around the holidays will make application overly cumbersome.

2. A change in the special enrollment rules will create unnecessary waiting for patients and not necessarily lower the cost for insurance companies. Data shows that the extra step of verification for special enrollment is more likely to be done by older people. People with bleeding disorders cannot wait 1-2 months for pre-verification. They need blood-clotting factor several times a week and this wait could cause them significant hardship in the form of bleeding episodes, missed work, and visits to the ER, or even disability or death.

3. Patients should be able to pay their debt to an insurance company while being covered. In AZ there is only one choice for insurance on the marketplace. For example, if someone on this plan with a bleeding disorder lost their job and couldn’t pay premiums then enrolled again and couldn’t pay the debt all at once, they would be denied coverage. This would be a significant hardship: bleeding, ER visits, loss of work, inability to pay premiums, etc. This negative cycle does not help the patient or the health care system. It would disproportionately hurt people like my children with expensive chronic health conditions.

4. Essential Community Providers are important for the bleeding disorder community to access health care. Many of our community are low-income and medically underserved. Insurers are currently able to explain when they can’t meet the number of ECPs in an area. Reducing a small administrative burden for insurance companies would be a huge medical, emotional, and financial burden for rural families with bleeding disorders.

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