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Advocacy Avenue

 

PENDING INSURANCE MARKET REFORMS: UNDERSTANDING THE POSSIBLE IMPACT

Understanding your health insurance coverage options is challenging in even the best of circumstances. But, when you add in the current uncertainty and dynamics of the health insurance market, these challenges are amplified. As we look to 2019, a lot of attention is being paid to the rising insurance premiums with good reason. Early rate filings from several states show double-digit premium increases for next year for marketplace plans, which are well above increases in previous years. But, that is just part of the story. Many experts believe that changes to marketplace plans and the individual market may impact employer-sponsored insurance. This sheet is designed to help you understand why these projections matter and what you can do to prepare.

Part of the reason for rising premiums is the 2019 Notice of Benefit and Payment Parameters (NBPP). Broadly, the NBPP:

  • Lowered protections for people with pre-existing conditions
  • Increased the cost of coverage; and
  • Increased barriers to enrollment

 

Specifically, NBPP gives states more flexibility to define their essential health benefits (EHBs).

 

As you may recall, EHBs are the ten categories of benefits that all plans must cover such as prescription drugs, hospitalizations, and emergency services. This is important to us because lifetime and annual limits are banned, and out-of-pocket expenses are capped only for services defined as EHBs. For more information about EHBs: https://www.cms.gov/cciio/resources/data-resources/ehb.html.

 

The administration has approved the following plans that don’t have to meet the Affordable Care Act (ACA) standards, including:

 

Short-term, limited duration (STLD) plans: bare bones or skinny plans

  • Non-ACA compliant because they do not count as minimum essential coverage
  • Generally, medically underwritten – applicants with health conditions can be turned down or charged higher premiums, without limit, based on health status, gender, age, and other factors
  • Plans can exclude coverage for people with pre-existing conditions
  • Not required to cover EHBs—many have limited or no coverage for prescription drugs
  • Can impose lifetime and annual limits
  • These plans are renewable up to three years

 

For more information about STLD plans:https://www.kff.org/hivaids/issue-brief/short-term-limited-duration-plans-and-hiv/

 

Association health plans (AHPs)

  • Allows small employers and self-employed people to join together and buy a new type of association health plan coverage (type of multiple employer welfare arrangements, or MEWAs)
  • AHPs do not have to meet all requirements applicable to other ACA-compliant plans
    • Not required to cover EHBs—many have limited or no coverage for prescription drugs
    • Could vary premiums based on gender, type of job/industry, and other factors

 

For more information about AHPs:https://www.kff.org/ health-reform/issue-brief/proposals-for-insurance-options-that-dont-comply-with-aca-rules-trade-offs-in-cost-and-regulation/.

 

It’s important to note that these proposals and actions are coupled with other aspects of the ACA, which have already been dismantled, including repeal of the individual mandate in the 2017 tax reform bill.

 

NHF and member Chapters have submitted comment letters in response to these proposals and previous attempts to compromise access to comprehensive insurance. In addition, we have signed onto numerous patient advocate letters protecting our access to care.

 

Update on Latest ACA Lawsuit

In February, a group of Republican state Attorneys General filed a case (Texas vs. US), which seeks to invalidate the ACA in its entirety. Their legal argument is that when last year’s tax reform law removed the penalty for the individual mandate starting in 2019, this not only essentially invalidates the mandate, but must also invalidate the entire ACA since the mandate is such an integral part of the law. The Department of Justice said that it would defend most of the ACA in this lawsuit but would not defend the ACA’s pre-existing conditions protections, since the guaranteed issue and community ratings provisions cannot be severed from the individual mandate. Since then, a group of Democratic state Attorneys General, as well as a number of additional health care stakeholders, including patient groups, providers, and insurers, have filed briefs supporting the ACA in general and pre-existing conditions protections in particular. The legal process for this lawsuit will take several months and there would likely be congressional and state action if the lawsuit is successful. NHF and member Chapters understand that many community members may have concerns about their access to coverage, and we will be closely monitoring the legal and political issues surrounding the lawsuit and will update the community as they progress.

WHY DOES THIS ALL MATTER AND HOW COULD THIS AFFECT ME?

Collectively, these regulations create two separate health insurance markets — one for the healthy and the other for people with pre-existing conditions. Moreover, it further destabilizes the health insurance marketplaces.

Plan options for those with pre-existing conditions could be limited and cost more. If you are eligible for a less-costly plan, it may not cover your needs such as prescription drugs, maternity care, and other EHB categories.

WHAT SHOULD I DO?
  • Buyer beware – we strongly encourage you to shop carefully! Look at all the details and don’t buy a plan just because it costs less. Ask questions, like are my prescription drugs covered? Will you have access to the providers you need? Are there limits on services or drugs?
  • Only you know your healthcare needs — use caution when considering recommendations for plans.
  • Call your HTC social worker or chapter for help in navigating plans!
  • Don’t wait until the last minute to shop!
  • Be prepared for higher premiums and plan accordingly.

NHF and EPC will continue to monitor these issues and provide updates. If you have any questions or concerns about your coverage please email NHF at advocate@hemophilia.org.

The 2018-19 PA Budget has been passed and the Hemophilia Program Line Item is safe. Thanks to all of our community members for their great advocacy efforts!

On Tuesday, April 17, 2018, members of the Eastern and Western Pennsylvania Chapters of the National Hemophilia Foundation gathered at the Capital Building in Harrisburg for the annual PA Advocacy Day. This also was World Hemophilia Day. There were over 70 meetings with legislators to discuss the importance of maintaining the Hemophilia Program Line Item, which helps support the seven Hemophilia Treatment Centers in the Commonwealth. Our community is also backing House Bill 2113 introduced by Representative Donna Oberlander (R-Allegheny). This bill would amend Pennsylvania’s Unfair Insurance Practices Act to prohibit commercial insurers from making coverage changes during the policy year that deny or increase the cost of a treatment, service or prescription that a patient is already receiving.

 

The Chapters are focused on building strong relationships with the governor’s office, Department of Health and legislators in the state house and senate. It is extremely important to continue increasing awareness for our community.

 

Recently, two resolutions were passed by our elected officials:

  • PA House Resolution 710 designates March, 2018 as Bleeding Disorders Awareness Month in the Commonwealth.
  • PA House Resolution 728 designates April 17, 2018 as World Hemophilia Day.

Both Chapters have developed important partnerships with the National Hemophilia Foundation and the Hemophilia Federation of America. A lobbyist firm also has been hired so that we can have a presence in Harrisburg throughout the year. In addition, it helps us stay informed and allows for quick responses. EPC will continue to update the community on current issues and potential challenges. (see images below in slideshow)

Tuesday, April 17, 2018, was officially recognized as “World Hemophilia Day” in Pennsylvania as resolved by the Commonwealth’s House of Representatives. In recognition, Philadelphia landmarks were lit red that included Boat House Row, the FMC Tower and the Cira Center. Additionally, a scrolling message appeared on the top of the PECO Building. The Capital Building in Harrisburg also was lit red.

 

Our young community members did an outstanding job creating awareness for the bleeding disorders community.

 

On World Hemophilia Day, the first grade class at Jenkintown Elementary came together to wear red in support of their classmate, Tommy DiCamillo, and to spread awareness. With the amazing efforts of the 1st grade teachers and staff at Jenkintown Elementary, the classmates collectively raised donations from friends and family that were matched dollar for dollar by their wonderful teacher. Together they raised $77 to be donated to EPC. We are so grateful for their thoughtfulness and hard work. A huge thank you to the first grade class, teachers and staff at Jenkintown Elementary!

 

Callie Padilla is a fifth grader at Monsignor McHugh School (MMS) in Cresco, Pa. She has von Willebrands disease and is treated at St. Christopher’s Hospital for Children in Philadelphia.

 

Callie’s classmates, teachers and administrative staff are aware of her bleeding disorder and support her. On Friday, May 11, 2018, her school held a “red shirt” dress down day to raise awareness. The school took pictures of all the students and to show their support, they held signs saying MMS Loves Callie!

 

 

 

 

PA House Resolution 710 designates March, 2018 as Bleeding Disorders Awareness Month in the Commonwealth.

 

PA House Resolution 728 designates April 17, 2018 as World Hemophilia Day. 

 

The Chapter was also formally recognized by NHF for their advocacy efforts.

 

2018 PA Advocacy Day and World Hemophilia Day

 

     

 

Advocacy Update

By Curt Krouse, Executive Director

 

The Eastern and Western Pennsylvania Chapters of the National Hemophilia Foundation have been very busy in Harrisburg this year meeting with members of the governor’s office and legislators to discuss the Hemophilia Program Line Item and the need to keep it separate and level funded. We were told from the start that the Governor would once again consolidate it with Cystic Fibrosis, Cooley’s Anemia and Sickle Cell. Because we had meetings so early in the year, our hope is that the line item will be immediately separated out in the House and Senate versions of the budget. This will be our main issue when we have our annual Advocacy Day on Tuesday, April 17. Both Chapters co-wrote an article on the Hemophilia Program Line Item that appeared in HeathNewsDigest.com, which you can read below.


To date, meetings have included:

  • Anne Baloga, Governor’s Budget Office
  • Mike Hanna, Jr., Governor’s Legislative Office
  • Danielle Guyer, Director of Budgetary Affairs, House Majority Caucus (Rep. Mike Turzai; R-Allegheny / Rep. Dave Reed; R-Indiana)
  • Caleb Sislak, Budget Analyst, House Democratic Appropriations Committee (Rep. Joseph Markosek; D-Allegheny)
  • Ann Bertolino, Budget Analyst, House Republican Appropriations Committee (Rep. Stan Saylor; R-York)
  • Scott Sikorski, Legislative Director, Senate Republican Leader’s Office (Sen. Jake Corman; R-Centre)
  • Lisa Fleming, Assistant Executive Director, Senate Democratic Appropriations Committee (Sen. Vincent Hughes; D-Philadelphia)
  • Tom Diehl, Budget Analyst, Senate Republican Appropriations Committee (Sen. Patrick Browne; R-Lehigh)
  • Steve Bruder, Policy Director, Senate Democratic Leader’s Office (Sen. Jay Costa; D-Allegheny)
  • Gabe Spece, Executive Director, House Democratic Caucus (Rep. Dan Frankel; D-Allegheny)
  • John McDermott, Legislative Assistant (Rep. Mike O’Brien; D-Philadelphia)
  • Sarah Kurish, Legislative Director (Sen. Larry Farnese; D-Philadelphia)


In addition, both Chapters will be supporting House Bill 2113 introduced by Representative Donna Oberlander (R-Allegheny). This bill would amend Pennsylvania’s Unfair Insurance Practices Act to prohibit commercial insurers from making coverage changes during the policy year that deny or increase the cost of a treatment, service or prescription that a patient is already receiving. We have joined a large coalition for this issue, which also will be part of our PA Advocacy Day.


If you have any questions regarding our advocacy efforts, please contact
Curt Krouse at (484) 445-4282 or curtk@hemophiliasupport.org.

 

PA Must Maintain Funding for Hemophilia Treatment Centers

By: Alison R. Yazer, Executive Director of the Western Pennsylvania Chapter of the National Hemophilia Foundation and Curt Krouse, Executive Director of the Eastern Pennsylvania Chapter of the National Hemophilia Foundation.

Originally published in HealthNewsDigest.com February 19, 2018

 

Unless you or someone you know has a bleeding disorder, you might not realize just how challenging it can be to receive appropriate care. Hemophilia patients must have access to lifelong treatments and medications necessary to control the condition. Such treatments can easily cost $300,000 per year and can surpass $1 million if complications occur.


It’s important to note that more than 3,000 people reside in Pennsylvania with bleeding disorders, such as hemophilia, von Willebrand disease and other factor deficiencies. In 1974, Pennsylvania became one of the first states in the U.S. to establish state support for our seven Hemophilia Treatment Centers (HTC) – which are regularly recognized on a national level for their excellence – to provide comprehensive care.


The members of Eastern and Western Pennsylvania Chapters of the National Hemophilia Foundation rely on critical funding from the Commonwealth to provide treatment and support. Every dollar of our funding goes directly to patient care, ensuring patients receive appropriate treatments and medications in order to live their life to the fullest. If these patients could not receive this care, it’s estimated that Pennsylvania would incur approximately five times more costs due to emergency care or care via Medicaid, and lost tax revenue from patients too sick to work.


According to studies conducted by the Centers for Disease Control and Prevention (CDC), patients who receive care at a HTC reduce their risk of mortality and medical complications by 40 percent. Moreover, the overall costs of care are reduced. Patients are able to enjoy a greater quality of life, remain gainfully employed and contribute to the community in ways they could not if they lacked the necessary care for their bleeding disorders.


Simply put, the Hemophilia Program Line Item saves Pennsylvania lives and saves Pennsylvania money.

We understand our legislators will again be tasked with balancing Pennsylvania’s budget which may require making cuts; however, funding for the Hemophilia Program must be maintained as its own line item. This program has a 40-year track record of success that has proven to be a smart investment for the Commonwealth. We urge our legislators to maintain funding for the hemophilia line item at its current level to ensure we continue to provide support and medical care for the more than 3,000 Pennsylvanians whose lives depend on it!

Advocacy Update

By Curt Krouse, Executive Director

 

The Eastern and Western Pennsylvania Chapters of the National Hemophilia Foundation held their annual Advocacy Retreat at the Hershey Lodge in Hershey, PA on Tuesday, October 24. In attendance were staff and board members from each chapter, representatives from four HTCs, patients, and advocacy leaders from NHF and HFA.


The purpose of the retreat was to evaluate areas of improvement and our accomplishments in 2017. We also looked at various issues that we may want to advocate for in 2018, which will be included in our agenda for PA Advocacy Day in the Spring.


If anyone in the community wants to bring a concern to our attention, please contact Curt Krouse at the EPC office. Once our plan has been developed, we will share it through The Winning Spirit, emails and social media. We look forward to your involvement, and to another successful year of advocacy.

 

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