EPC of the NHF hfafacebookinstagramtwitter

Advocacy Avenue


By running Obamacare exchange, Pa. hopes to sign up many more people while also cutting premiums

By David Wenner | dwenner@pennlive.com


President Donald Trump and his administration, no fans of the Affordable Care Act, have been forced to live it with. But that doesn’t mean they have to help it, as evidenced by their cut back on marketing and “navigators” to help people sign up for the coverage known as Obamacare.

But Pennsylvania, which plans to take over the electronic marketplace for Obamacare coverage, also expects to take over the marketing, state insurance commissioner Jessica Altman said on Monday.

“We’re going to be bringing that back with force,” she said, referring to outreach and navigator efforts which have shrunk as a result of reduced federal funding. It could result in up to 100,000 more Pennsylvanians enrolled in Obamacare, she said.

With the cutback in outreach funds, Pennsylvania has run its own ads to help guide people to the coverage, aimed at people who lack access to health insurance at work. However, it has relied on a “blanket” approach to reaching people, which is inefficient, she said.

But it in taking over the exchange, Pennsylvania will also gain access to data that can guide the state to people such as those who for some reason stopped during the enrollment process. Altman also gave the example of a family whose child turns 26, making the child no longer eligible as a dependent, but perhaps eligible to buy their own coverage on the exchange.

Having access to the data, formerly held by the federal government, will allow the state to call such people, she said.

Presently, about 400,000 Pennsylvanians obtain coverage by way of the exchange — down from the peak. Altman estimates up to 100,000 more state residents could benefit from coverage sold on the exchange.

The exchange, which has existed since 2013, enables people to compare and enroll in health insurance plans from private health insurers, and also sign up for federal help toward premiums, co-pays and deductibles.

About 80 percent of Pennsylvanians using the exchange receive financial help, which varies according to income and is available to people earning up to $83,120 for a family of three.

However, it’s the 20 percent of people who buy coverage on the exchange but get no financial help that drove Pennsylvania’s plan to take over the exchange, according to Altman.


They are the only ones who have to bear the full burden of their health care costs, with no help from an employer, which typically pays 50 percent or more of the cost, or a government program such as Medicaid. This group can include people who retire before becoming eligible for Medicare at 65, people who own their own business, or members of the “gig economy” of independent contractors.

For them, affordability of coverage has been a major obstacle in an otherwise stable Obamacare market in Pennsylvania, Altman said.

Now, the state expects to lower their premiums by running its own electronic marketplace or exchange — something the state considered but rejected during the lead up to the launch of Obamacare, based on factors including the complexity of the task.

In the six years since then, private vendors have begun providing the technology, enabling about a dozen states to run their own exchange, with several more including Pennsylvania planning to join them.


As it stands, Pennsylvania has been paying the federal government about $88 million annually for the exchange, with the money coming from a fee charged to health insurers selling exchange-based coverage.

Pennsylvania has determined it can run an exchange for $30-$35 million annually. Further, it plans to use the savings toward a federal program that funds reinsurance to help health insurers offset the costs of extremely sick people who rack up uncommonly large medical bills.

By applying the $40-$50 million saved by running the exchange, the state can draw down $150-$250 million in federal money toward reinsurance. That infusion of money can drive down health insurance premiums by 5-10 percent, the state has calculated.

In discussing the move at an employee forum at Capital Blue Cross in Susquehanna Township on Monday, Altman and others noted it’s the rare major proposal that received unanimous support from both Democratic and Republican lawmakers in Pennsylvania.

“We do something that’s unquestionably good,” she said. “We can save people money and we’re not asking for any money from the [state’s] general fund.”

The state hopes to have the exchange up and running in time for the 2020 open season when people will buy coverage for 2021.

Still, it’s not 100 percent final. Pennsylvania still needs a special waiver from the federal government. Moreover, a federal appeals court is considering a lower court ruling that declared Obamacare unconstitutional. If that happens, Pennsylvania wouldn’t be able to continue the exchange and the coverage, Altman said.

However, Altman said state officials and lawmakers discussed every possible obstacle they would think of, and concluded that, barring major change to the ACA, there’s little chance the plan to take over the exchange will backfire, and that Pennsylvania consumers won’t benefit. “There is no value to having blinders on to the things that could get in the way,” she said.

Originally Published July 2019 in PA PENN LIVE


Advocacy Update


The PA Hemophilia Coalition held its annual Advocacy Day on Tuesday, April 19, 2019 at the Capital Building in Harrisburg. Community members throughout the state participated by helping to educate our legislators. Our budgetary ask was to preserve the Hemophilia Program Line Item in the state budget, which helps support our seven hemophilia treatment centers. In the area of legislation, we are advocating for bills at the state level that protect the elimination of lifetime caps and those with pre-existing conditions. In addition, a larger coalition of national and state advocacy organizations has formed to protect patients if insurance companies implement accumulator adjusters.

The PA Hemophilia Coalition also focuses on creating awareness and building strong relations in Harrisburg and throughout Pennsylvania. One such opportunity was this past March, which was Bleeding Disorders Awareness Month. Resolutions recognizing this special month were passed in Harrisburg by both the state house and senate. Resolutions also were passed along with a proclamation from the Governor for World Hemophilia Day on Wednesday, April 17, 2019. In addition, a resolution was passed by Philadelphia City Council. On this day, you may have seen the FMC Tower, Cira Center and Boat House Row lit in red, and a scrolling message across the PECO Building. The PA State Capital Building also was lit in red.

Our young community members also participated in World Hemophilia Day. Tommy DiCamillo, as well as his entire second grade class at Jenkintown Elementary School, dressed in red to show support for those with hemophilia, like Tommy. They also had the opportunity to make a small donation of $1 (or whatever they felt comfortable with) to be donated to Eastern PA in Tommy’s name. The second grade gathered for a small assembly where Tommy and his mom Vickie explained what hemophilia is and shared his journey with it over the last 8 years. They showed many pictures of his life with hemophilia and allowed the kids to ask questions.


Callie Padilla, an 11 year old and sixth grader at Monsignor McHugh School, had her whole school get involved on World Hemophilia Day. All students from pre-kindergarten to 8th grade wore red. This is the third year her school has participated in a red shirt day for bleeding disorders awareness. Her school has been very supportive as you can see by the “we love Callie” signs. Callie also is an honorary cheerleader for East Stroudsburg University. The Cheerleaders made red ties on their sneakers for the basketball team’s playoff game in March to recognize Bleeding Bleedings Awareness Month.

Advocacy Update


In early January, the Eastern and Western PA Chapters traveled to Harrisburg to meet with representatives from the Appropriations Committees for the House Republicans and Democrats as well as the Senate Republicans and Democrats. In addition, there were meetings with Sarah Boateng, Executive Deputy Secretary for the Department of Health and Jen Swails, Budget Secretary. Our discussions focused on the Hemophilia Program, which once again was combined with other line items in the Governor’s proposed 2019-2020 budget.


Governor Wolf was sent letters supporting the Hemophilia Program as a separate line item with at least level funding from Representative Thomas Mehaffie III, Senator Tom Killion, Representative MaryLouise Isaacsons, Representative Dan Frankel (Chairman-Democratic Health Committee) and Senator Lawrence Farnese, Jr. More letters will be coming.


In addition, Senator Jay Costa and Representative Maureen Madden are sponsoring a resolution recognizing March, 2019 as “Bleeding Disorders Awareness Month” in Pennsylvania. Senator Costa and Representative Frankel are sponsoring a resolution recognizing April 17, 2019 as “World Hemophilia Day.”

Advocacy Update

The PA Hemophilia Chapters held their annual Advocacy Retreat on Monday, November 26 at the Hilton Harrisburg. Attendees included representatives from the Eastern PA Chapter, Western PA Chapter, National Hemophilia Foundation, Hemophilia Federation of America, St. Christopher’s Hospital for Children, Children’s Hospital of Philadelphia, Hospital of the University of Pennsylvania, Thomas Jefferson University Hospital, Lehigh Valley Hospital, Penn State Hershey Medical Center and Milliron & Goodman Government Relations. There also was a special visit from PA Insurance Commissioner Jessica Altman. She is very protective of patients and a true advocate for access to care.

Issues discussed included 2018 PA Election Results, Hemophilia Program Line Item, Accumulator Adjuster, Medicaid, Step Therapy, Prior Authorization, “Skinny Plans” and Essential Health Benefits.

From this retreat, a 2019 advocacy plan will be developed and shared with the EPC community


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.


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.

  • 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.


Find My Legislator.