The Senate Health Care Vote Delayed 


Senator McConnell has announced consideration of the health care bill will be deferred. Due to a health absence from Senator McCain, the health care bill does not have enough support to pass the Senate. 

While it is still unclear when a vote will be held, if ever, it will be necessary to wait until Senator McCain returns to the Senate. 

Revised Senate Health Care Bill:
On July 13, 2017, the US Senate introduced a revised health care plan. The new plan still includes deep cuts to Medicaid and lower subsidies to buy insurance than offered under the Affordable Care Act.

Changes to the bill include:

  • addition of the Cruz amendment that would undermine protections for those with preexisting conditions: introduced by Senator Ted Cruz, this amendment would allow insurers who offer regulated, broad-coverage plans on the marketplace to also offer skimpy plans that do not adhere to ACA regulations. This change would create a two-tiered system–healthy individuals would purchase the skimpy plans, while sicker individuals would flood the marketplace. Individuals with higher health care costs would thus find themselves in a high risk pool with higher premiums. 
  • a $45billion fund to help address the opioid crisis
  • elimination of two tax cuts on individuals making over $200,000
  • a change in health savings accounts to allow funds to be used for premium payments


The Senate Unveils Their Health Care Plan


The Senate has just released their plan for health care reform. While the plan differs from that of the House's American Health Care Act, it would enact many similar changes including; phasing out the federal government's support for expanded Medicaid, converting Medicaid funding to per capita caps, allowing states to apply for waivers to drop essential health benefits, and repealing most of the taxes implemented by the Affordable Care Act. Unlike the AHCA, the Senate's bill would shift more subsidies for health insurance to low-income Americans. 

It is important that the bleeding disorders community shares their health care needs with members of the Senate NOW!
A vote is expected next week. 

HFM has shared our position on health reform with Senator Peters & Stabenow, but we need your voices too!
View HFM's letter here. 

Write your Senators today: 

Email Senator Gary Peters here. 

Email Senator Debbie Stabenow here. 

What are Essential Health Benefits and why are they important?


In 2010, the Affordable Care Act implemented many crucial patient protections that have positively impacted the bleeding disorders community, including the ban on annual and lifetime limits on benefits, the cap on out-of-pocket expenses, and the requirement that plans not be discriminatory. 

The elimination of lifetime caps has been a top priority for people with bleeding disorders. Since the cost of factor is so high, individuals would regularly hit lifetime limits on their benefits before the ACA was enacted. 

However, the ACA only extends patient protections, such as the elimination of lifetime caps, to services that are defined as Essential Health Benefits. If the definition of Essential Health Benefits is changed or reduced, the elimination of lifetime caps would not be meaningful, i.e., If prescription drug coverage is not defined as an essential health benefit, the cap on out of pocket expenses and the cap on annual and lifetime limits would not apply to factor costs.

On March 6, the US House of Representatives introduced the American Health Care Act (AHCA)–for the second time–to repeal and replace parts of the ACA. The MacArthur amendment in the AHCA would move the decision to require insurers to cover the 10 essential health benefits (EHBs) to the states.

If the decision to determine the essential health benefits is transferred to the states, we ask that the state maintains essential health benefits as defined in the Affordable Care Act. 

  • 10 Essential Health Benefits defined in the Affordable Care Act: prescription drugs, maternity care, ambulatory care, emergency services, hospitalization, mental health and substance abuse, laboratory services, preventative services and chronic disease management, pediatric services, and rehabilitative and habilitative services. 

American Health Care Act passed by the US House of Representatives


On May 4, 2017, the House passed the American Health Care Act by 217 to 213, with all Republican Representatives from Michigan supporting the bill. The AHCA passed with the addition of two amendements, the MacArthur amendment and the Upton amendment. The MacArthur amendment gives states the option to define the Essential Health Benefits, obtain a waiver to engage in health status underwriting, and to request waivers to increase age rating ratios above 5 to 1 (meaning insurers could charge older individuals more than five times what they charge a young adult). 

The Upton amendment was added by Congressman Fred Upton of Michigan to curb fears that individuals with preexisting conditions could be charged more for coverage. Rep. Upton added $8 billion to help individuals with preexisting conditions obtain coverage. However, $8 billion would not provide enough support to high risk pools to provide necessary coverage to individuals with preexisting conditons. 

HFM joins NHF, HFA, the National Organization for Rare Diseases, and Families USA, in our opposition to the American Health Care Act as the law currently stands. Individuals with bleeding disorders could face increasingly unaffordable costs for care. As the bill moves to the Senate, HFM will continue to advocate for improved coverage for the bleeding disorders community. 

Click here to read about the next steps in the AHCA's journey to become law (link to article). 

Contact your Representatives here and tell them how the AHCA will affect you if it becomes law. 


The AHCA & MacArthur amendment


The House of Representatives has revived the American Health Care Act (AHCA) and plans to vote on the bill as early as Friday, April 28, 2017. 

The revised bill includes the MacArthur amendment, proposed by Congressman Tom MacArthur. The amendment would allow states to opt out of the essential health benefits requirement. Essential Health Benefits (EHBs) are important to the bleeding disorders community because many patient protections (such as the elimination of lifetime caps and the limit on out of pocket expenses) only apply to coverage defined as an Essential Health Benefit. 

Additionally, the amendment would allow states to engage in health status underwriting for individuals who do not maintain continuous coverage. This would allow insurers to charge individuals more if they have a chronic conditon like a bleeding disorder. 

According to the Health Affairs blog, "health status underwriting could effectively make coverage completely unaffordable to people with preexisting conditions."


The American Health Care Act (AHCA)–click to read the bill.


On March 6, 2017, House Republicans introduced the American Health Care Act (AHCA). The AHCA aims to repeal parts of the Affordable Care Act through a process called budget reconciliation (meaning the bill can only address budget-related provisions). 

The bill maintains key patient protections including the ban on denying coverage for individuals with preexisting conditions, the ban on lifetime and annual caps on benefits, allowing children to stay on their parents insurance until age 26, and the limit on out-of-pocket maximums. 

However, the ACHA would freeze enrollment in the Medicaid expansion in 2020 and change Medicaid funding to a 'per capita cap,' enact a 30% surcharge on premiums for individuals who do not maintain continuous health insurance coverage, and eliminate ACA subsidies to buy insurance. 

Read more about key provisions in the AHCA here.

Read how the AHCA would impact the state of Michigan. 


What do we do?

HFM has a long history of involvement in legislative policy issues and advocacy outreach. Lansing Day, our state advocacy day, has become a permanent fixture of our organization since its inception in 2005. Our legislative day allows constituents the opportunity to visit with legislators and educate them on the needs and special interests of the bleeding disorders community. Lansing Day is held every May, join us this year for Lansing Day 2017, May 23rd and 24th.

We are happy to share that HFM has created an advocacy committee to assist staff members enhance our advocacy program and develop a year-round structure of involvement. Our advocacy committee includes community members, NHF/HFA representatives, government relations specialists, and other external stakeholders and meets once a month. 

HFM attends national advocacy events, including the National Hemophilia Foundation's annual legislative day, Washington Days.

Our advocacy staff monitors and researches policy issues that may negatively impact members of the bleeding disorders community. 


What is going on?

What we are paying attention to…

On the state level, HFM is monitoring the following issues:

  • Michigan’s Children’s Special Health Care Services program.
  • The Medicaid carve-out for clotting factor.
  • Adequate Medicaid pharmacy reimbursement for bleeding disorder therapies.
  • Step therapy or “fail first” cost control practices.
  • Prior authorization process.
  • Access to dental care for people with bleeding disorders.

What is Children's Special Health Care Services (CSHCS)? And why is it so important for the Michigan bleeding disorders community?

Children’s Special Health Care Services is a program within the Michigan Department of Health and Human Services, provided under Title V of the Federal Social Security Act. It is designed for children and some adults with specialty health care needs. 

CSHCS covers people until the age of 21 with a qualifying medical condition. However, the age limitation is waived for patients with certain blood clotting disorders (Hemophilia and other bleeding disorders) and cystic fibrosis.

CSHCS helps cover the costs associated with treatment for bleeding disorders. These services can include paying specialty medical bills, coordinating services from multiple providers, education about specialty providers, coordinating health insurance benefits, and covering copays/deductibles.

For more information regarding CSHCS please visit click here.


On the federal level, HFM works with the National Hemophilia Foundation and the Hemophilia Federation of America to stay aware of any changes that may impact our community. HFM is in constant communication with NHF and HFA policy staff members and represents Michigan at NHF's federal legislative advocacy day, Washington Days.

To review the National Hemophilia Foundation's advocacy work click here. 

To review the Hemophilia Federation of America's advocacy work click here. 

Health Coverage:

ACA, Medicaid Expansion

In the current political climate, changes to health care have been front and center for people with chronic conditions. While it is not clear of the exact changes that policy makers might make to the current healthcare system, it is imperative that the bleeding disorders community stay alert and informed. 

To read details on health care changes, including congressional actions regarding the Affordable Care Act and Medicaid/Medicare, throughout the transition visit HFA's Health Legislation Outlook.

To find out how Michigan is impacted by the ACA’s Medicaid Expansions, click here.

ACA rules and regulations that have a positive impact on the bleeding disorders community:

  • Coverage for individuals with pre-existing conditions
  • No annual or lifetime limits on benefits
  • Children can receive coverage under their parent's health plan until the age of 26
  • Caps on out-of-pocket expenses


What can you do?

  • Take HFM’s Access to Treatment Survey to help HFM stay updated on the access to care issues affecting our community.
  • NEW this year, HFM is working to coordinate Coffee with Your Legislator events in 2017. Stay tuned for more information!
  • Contact your representatives and let your voice be heard.
  • Attend HFM’s annual state legislative day, Lansing Day. 
  • Do you have a specific insurance issue? Contact HFA's Project CALLS below:



Questions or comments?

Contact Sarah Procario at or 734.961.3516






Join HFM

Sign up for your annual membership to the Hemophilia Foundation of Michigan!

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