November 2018 Newsletter

In this Issue…

Notes from Joe
· Telling Our Stories

Washington Update
· Election Overview and Impact for the Bleeding Disorders Community

Payer Update
· BAA Humbug

Notes from the Community
· Hemophilia Patient Satisfaction Survey Released
· Updates from the Hemophilia Alliance Foundation

Alliance Update
· Operations Update

Team Alliance Contact Information

Notes from Joe

Telling Our Stories
By Joe Pugliese

Well, the elections are over. Usually we get a break from the nonstop rhetoric at least for a couple of months but the campaign for 2020 has already started. Read on for an update from our policy team about what happened in the election and what it means for our community. A divided Washington means that it’s hard to understand how anything useful will get done in the next two years. Like most people, I find this disappointing since we face so many challenges. You would think it would be easy to see why the HTC network should be supported and nurtured, yet we find ourselves constantly trying to quantify the value of the network to insurers, policy makers and even some members of the community.

Here are two common criticisms: First, “If you’ve seen one HTC, you’ve seen one.” The implication of this is that some are better than others, which is true for any group you want to compare. My response is always that if you have a bleeding disorder, you are always better off being seen at a federally-supported center. The second comment is that HTCs have “too much money.” Let’s remember that the federal grant is at most a whopping $35,000 per center – almost enough to pay the rent and the utilities. This comment generally comes from people who a financial interest in dispensing factor replacement therapies.

What should we be doing? Advocacy springs to mind. Over 100 representatives from chapters and HTCs across the country just met in Baltimore at the annual NHF reimbursement and insurance conference. While sessions focused on how to tackle insurance challenges in Medicaid, Medicare and private insurance, the underlying message was we all need to be out there, telling our story. This is true whether you’re at an HTC or a chapter. Ideally, at both the state and federal levels, advocacy involves the chapter, their members and HTC staff going together to tell the story.

So, what is our story? We know that HTCs provide excellent clinical and pharmacy services for people with bleeding and clotting disorders. You don’t have to take my word for it – keep reading for results from the second HTC Patient Satisfaction Survey, whose results won’t surprise you! We have invested an embarrassingly modest amount of federal dollars into a vibrant and diverse network of comprehensive care centers. We need to advocate to ensure that HTCs can continue to participate in 340B, and continue to be in network for clinical and pharmacy services, and ultimately, that they are able to provide this excellent care for their patients. I hope that you’ll join us!

Washington Update

Election Overview and Impact for the Bleeding Disorders Community
By Ellen Riker and Johanna Gray

The mid-term elections reflected the current divide in our country. The popular vote went to the Democratic Party with a gain of at least 38 seats and takeover of the majority of the House of Representatives and significant gains of governorships. The Republican Party further solidified its majority in the Senate with a net gain of two Republican seats. While the party control of the House and Senate are confirmed, there are a few lingering races still to be decided. In the House, the election will result in major changes in leadership, oversight and policy agendas; the Senate will likely continue its bipartisan work in at least the healthcare arena.

What will be the Impact for the Bleeding Disorders Community?

In the House, Nancy Pelosi (CA) is running for her former position as Speaker. The Chairs for the key Committees with jurisdiction over health policy, Medicare and Medicaid will likely be the former Ranking Members on the Committees, who have all served in Congress for many years and have an understanding of bleeding disorders, HTCs and the 340B program. The anticipated Chairs and Committee jurisdiction are as follows:

  • Rep Nita Lowey (NY) – Appropriations (funding of HRSA, CDC, NIH programs)
  • Rep Frank Pallone (NJ) – Energy and Commerce (public health agencies/programs including 340B, Medicare Part B and Medicaid, ACA)
  • Rep Richard Neal (MA) – Ways and Means (Medicare and ACA)

The Democratic leadership has already stated that protecting the Affordable Care Act (ACA) and addressing the high cost of drugs will be at the top of their agenda. We may see legislation early next year to ensure that health plans cannot discriminate against people with pre-existing conditions or to reverse policy decisions made by the Trump Administration over the past two years to weaken the ACA. There will likely be numerous hearings on other issues related to the Trump Administration’s actions to undermine the ACA, which could result in legislation.

It will be interesting to see if the Democrats attempt to work with President Trump when it comes to reducing spending for pharmaceuticals under Medicare or take other steps to rein in high drug prices. It is also via this debate that reforms to the 340B program may arise. The Democrats on the House Energy and Commerce Committee have been very supportive of HTCs and other grantees who participate in the 340B program, but many have also stated in public hearings that they believe the program needs greater transparency and oversight. This could be a driver for legislation in the coming year.

In the Senate, Senator McConnell is expected to continue in his role as the Majority Leader of the Senate. The current Chairmen of the Senate Committees that oversee health programs also will likely remain the same in the new Congress except for the Senate Finance Committee as shown below:

  • Senator Richard Shelby (AL) – Appropriations (same as House Appropriations – funding of HRSA, CDC, NIH programs)
  • Senator Lamar Alexander (TN) – HELP (public health agencies/programs, 340B and ACA)
  • Senator Chuck Grassley (IA) – Finance (Medicare, Medicaid, and ACA)

While the net gain of Republican Senators will allow for wider margins in the Committees, the Chairs of the Appropriations and HELP Committees will likely continue to seek compromises and work in a bipartisan fashion. It may be difficult for the HELP and Finance Republicans to reach consensus on health policy matters, including those related to the ACA, drug pricing and 340B policy, with their Democratic counterparts in the House. Since Senator Grassley has assumed the chairmanship of the Finance Committee, the Committee is more likely to engage on 340B issues since he has been a skeptic of the program. Due to its jurisdiction, legislation would focus on the use of 340B in Medicare and Medicaid.

One area of bipartisan, bicameral consensus is likely to be federal funding for biomedical research at the NIH. Support for appropriations for the CDC and HRSA will also likely continue, though tight budget caps mean that it will be difficult to achieve increases for those programs. We will continue to advocate for funding for the hemophilia programs and activities at all three agencies.

In the States, the election was also a big win for supporters of Medicaid expansion as voters in three states, Nebraska, Idaho, and Utah, passed ballot initiatives to expand Medicaid. Additionally, many anticipate that a fourth state, Kansas will likely expand Medicaid in 2019 as the newly-elected Democratic governor will replace the current Republican governor who previously vetoed legislation that would have expanded Medicaid. Democratic candidates for Governor were also successful in Maine, Wisconsin and Michigan, which may result in positive changes related to Medicaid and ACA implementation in those states.

What’s next?

First, Congress has return to Washington for about a month-long lame duck session. Congress has to pass a few additional (non-health) appropriations bills before December 7th, but it is unclear whether any health policy matters will be taken up by the current Congress. Before the election, there were rumors that Congress may again attempt to repeal or amend the ACA. But this policy idea remains deeply unpopular and it is not certain that current Republican Congressional leaders would move forward with votes that may be unsuccessful. The Alliance is closely monitoring the activities of the Administration and Congress and will keep the community aware of any changes in policies or programs. We will also begin planning for 2019 to take advantage of opportunities and to minimize threats.

Finally, the election will bring many new Senators and Representatives and staff members to Congress, meaning many new people to educate about bleeding disorders, HTCs and the 340B program. This makes the Alliance’s 2019 Advocacy Day especially important and we encourage the participation of Alliance members and their patients this spring.

Payer Update

BAA Humbug
By Mark Plencner

During the Hemophilia Alliance Fall meeting in Las Vegas, the Payer Team reviewed the process used to work with brokers/consultants, PBMs, insurers and third-party administrators (TPAs) to keep HTC Pharmacies (or their contract pharmacies) in network and return dispensations to the HTC. One important part to the process is to obtain a Business Associate Agreement (BAA). This agreement allows for exchange of patient information, so the Hemophilia Alliance can help solve insurance issues. The Hemophilia Alliance keeps all information confidential and follows all HIPAA Privacy and Security rules. The BAA is beneficial for the first Letter of Agreement (LOA) we negotiate on behalf of an HTC, but also covers any additional negotiations involving your patients as we move forward. The challenge we have is getting a signed BAA due to the amount of time it takes to get through the organizational review process. This can take weeks to months.

To help speed the process with LOAs, we are now requesting that you work with the patient to sign your own organization’s Release of Information (ROI) that allows the HTC to share PHI with the Hemophilia Alliance. The entire patient medical record is not necessary. Rather, we just need information related to the name, DOB, diagnosis, insurance, employer and prescription information (date, doctor, drug, dose, frequency). With this information, we can work directly with the broker/consultant, PBM, payer, or TPA to determine potential savings by working with the HTC and their pharmacy program and then work quickly to develop a LOA.

By requesting an ROI, this is also an excellent time to discuss a BAA with your administrators and legal team. If you can show the financial results of a LOA negotiated by the Payer Team, as well as the potential for more patients returning to the HTC, the groundswell to get that BAA signed may work to your advantage. Why is this important? As we move beyond single-case agreements toward the next step of regional and national agreements with large multi-state self-insured employers, it will be necessary to get agreements from multiple HTC’s at the same time. Your effort to have a BAA in place today may prove to be the difference in speeding our negotiations that ultimately benefit your HTC.

If you have any questions about how the Hemophilia Alliance can help with your payer issues, please contact us.

Notes from the Community

Hemophilia Patient Satisfaction Survey Released
By Judith R. Baker, DrPH, MHSA, Public Health Director, Western States Regional Hemophilia Network

In 2018, the US Hemophilia Treatment Center Network (USHTCN) launched the second national Patient Satisfaction Survey (PSS) to measure patient satisfaction with services, team members, HTC care processes, and HTC Factor Program/Pharmacy services. Adolescent transition of care to adult providers and services was assessed, as were insurance and language barriers to obtaining care. Finally, an open-ended question sought qualitative data. Persons with genetic bleeding disorders who had HTC contact in 2017 were eligible to participate. Respondents were anonymous but the HTC where they received care was identified. Participation was voluntary. Over 4700 patients/caregivers participated from nearly 130 or 92% of all HTCs in the US.

National trends document overall patient satisfaction with HTC was extremely high, with 96% of respondents “always” or “usually” satisfied with overall HTC care. Over 85% indicated that they were ‘always’ or ‘usually’ satisfied with the HTC Core team members: hematologist, nurse or nurse practitioner, social worker, or physical therapist . Between 93% – 98% were ‘always’ or ‘usually’ satisfied with HTC services and care processes such as: being treated respectfully (98%); spending enough time with staff (97%); obtaining understandable information (97%); being involved in decision making (97%); getting timely services (95%); ease of contacting the HTC (95%); and care coordination (93%). Ninety-six percent of over 2700 respondents indicated they were ‘always’ or ‘usually’ satisfied with their HTC Pharmacy (340B) Factor Program.

National results were presented as poster in October 2018 at the National Hemophilia Foundation’s 70th Annual Bleeding Disorders Conference and the American Thrombosis and Hemostasis Data Summit. The PSS abstract was honored as being chosen by NHF as one of the top four abstracts, and presented during the Physician Track. The 2018 poster and articles from the 2015 PSS are available on the PSS website’s news section. If you have questions, please contact us at

Updates from the Hemophilia Alliance Foundation

The Hemophilia Alliance Foundation will be posting its 2019 Grant Guidance on its website on December 1, 2018. Since 2009 the Alliance Foundation has been making a positive difference in the community, helping chapters, centers, and national community organizations build capacity and support and expand their missions. Organizations interested in submitting applications should review the grant guidance before finalizing their applications. The guidance for 2019 can be found at the Foundation’s website on December 1.

Also, as previously noted, the Foundation is accepting applications for board membership until November 30, 2018. Interested individuals should complete the application materials and send them by email to Michael Craciunoiu at Applications received after November 30 will not be considered. More information, including the Board Member job description and application packet, is available on the Foundation’s website.

Alliance Update

Operations Update
By Sean Singh

We are updating the Alliance website home page to include a list of important events and updates from the community. We continue to look for ways to improve the information we have available on the website and in the member’s section. We have added the presentations from the fall meeting and they are downloadable for our members. In addition, we have added the recorded webinars from some of presentations during the year. The most recent one being the presentation by Accredo.

We have a few more webinars scheduled for the 2018 and you can find a list of them here. We are working on developing our webinar series for 2019. If there are any particular topics you would like to get more information about, please let us know. Here are some topics we have in the works:

  • Payer Changes and how to adapt
  • Advocacy – How to educate a new Congress.
  • Policies and Procedures – starting with the basics.
  • Pharmacy operations – doing the math.

We are working on a new reporting mechanism for center purchase data and will have more information on this change in the new year. Some of the changes will include the ability to provide feedback on your business more than once a year. The data will help you understand and run your business more effectively.

2019 Meeting Schedule
Board Meeting – January 13-15
Hill Day and Member Meeting – April 21-26 (Dates not finalized)
Fall Member Meeting – September 22-24

As a reminder, the member’s section of the Alliance website if for our members only and contract pharmacies or management organizations should not have access. We remind you that our pricing is confidential and should not be shared with your contract pharmacy or management organization. If you are an employee of the HTC or institution you can request a username and password by going to the homepage and clicking on “Join” and complete the form. Should you have any questions please feel free to contact Sean Singh at

Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

Name Email Phone
Joe Pugliese 215-439-7173
Sean Singh 727-388-7326
Jeff Blake 317-657-5913
Jeff Amond 608-206-3132
Karen Bowe 717-571-0266
Johanna Gray, MPA 703-304-8111
Kiet Huynh 917-362-1382
Elizabeth Karan 612-202-3240
Kimberly W. Lackman 813-400-6710
Roland P. Lamy, Jr. 603-491-0853
Dr. George L. Oestrich, Pharm.D., MPA 573-230-7075
Ellen Riker 202-257-6670
Mark Plencner 701-318-2910
Michael B. Glomb 202-466-8960
Theresa Parker 727-688-2568
Joel Bellucci 727-504-0491