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Labor Day 2017 Newsletter

In this Issue…

Notes from Joe
· Coming Together as a Community

Payer Update
· Jeff Amond will join the Hemophilia Alliance as Director of Payer Relations September 16th
· New Medicare ID Cards Coming

Washington Update
· Preparing for a Wild September!

Notes from the Community
· Update from the Hemophilia Alliance Foundation

Alliance Update
· Updates about Alliance Meeting for 2017 and 2018
· Team Alliance Contact Information

Notes from Joe

Coming Together as a Community
By Joe Pugliese

The big news this month was of course the annual National Hemophilia Foundation meeting which wrapped up last Saturday. I am often asked how many NHF meetings I have attended. I can only recall missing one meeting since 1980. This year’s meeting simply seemed to build on the on the energy and success of the previous meetings. It is apparently the last summertime meeting at least for awhile; next year will be in Orlando in the more traditional October timeframe.

The meeting is a must-attend event for many in the community for families and patients, clinicians, manufacturers and pharmacy providers. It is a great opportunity to learn and more importantly connect with old friends. It is also time to recognize those we have performed above and beyond. Many of your colleagues from across the country and from all disciplines were recognized at the annual award luncheon. Special acknowledgement go to the lifetime achievement award winners, George McCoy and Susan Karp RN, and life-long achievement award winner, Liz Miller RN. It is also special to note that Tamara Vogel, our most recent past Alliance Board chair was awarded the Humanitarian of the Year award. Congratulations to all the winners!

It is also an excellent opportunity to think about what we have accomplished and how we can change to better address the needs of the community. I think one of the challenges with trying to address the problems we face in delivering and paying for healthcare is we keep trying small, incremental solutions to a huge problem. I think we have to go big or go home . We will all need to work together to ensure access to care for our vulnerable patient population.

The next time our HTC community will come together is at the Alliance Fall Member Meeting. For the first time, we had to close registration. Half of the people attending have never attended a meeting before. To meet the needs of our diverse membership, we are holding breakout sessions this year. We will be introducing the newest member of the Alliance team and sharing with you successes and opportunities we see for each of our members to grow their programs in the months and years ahead.

Finally, our thoughts and prayers go out to all the people in Texas who are impacted by Hurricane Harvey. I am proud to tell you that the Boards of the Hemophilia Alliance, the Hemophilia Alliance Foundation, and The Alliance Pharmacy all approved emergency funding and checks are in hand for the Lone Star Chapter, based in Houston.

Payer Update

Jeff Amond will join the Hemophilia Alliance as Director of Payer Relations September 16th
Jeff Blake

We are very excited to announce that Jeff Amond will join the Hemophilia Alliance on September 16th as the Director of Payer Relations for the Hemophilia Alliance. In this capacity, he will work with HTCs and insurance payers in the Midwest on insurance contracting, reimbursement items and payer relations. Adding Jeff will enhance our ability to help HTCs in the Midwest and around the country deal with the ever changing insurance landscape.

Jeff started his career in hemophilia in 2004 when he was hired as the Psychosocial Specialist for the American Red Cross Badger Center for Bleeding Disorders. In November of 2005 the program and its staff became employees of the University of Wisconsin Hospital & Clinics (UWHC). Jeff has been the program’s Clinical Social Worker since 2005. In addition to being the Clinical Social Worker, he was responsible for overseeing most aspects of their 340B Program insurance and reimbursement activities. Jeff was the primary contact for insurance companies and worked very closely with patients on their health insurance needs and issues. Jeff has experience with Letters of Agreements (LOAs), billing issues, prior authorizations and educating insurance company personnel on the value of the HTC integrated care model and pharmacy program. He worked closely with the University of Wisconsin Health System’s payer contracting team and brings the experience of working for a HTC located in a large institution.

Jeff received his Bachelor’s Degree in Social Work from the University of Wisconsin La Crosse in 1996 and his Master’s Degree in Social Work from the University of Wisconsin Madison in 2001. Jeff lives in Waunakee, Wisconsin with his wife Kate and three children (Emerson, Bennett & Jack).

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New Medicare ID Cards Coming – By Jeff Blake

Does your HTC and Pharmacy see patients with Medicare? Did you know Medicare will be issuing new ID Cards to all Medicare members? That’s correct, CMS is removing Social Security Numbers from Medicare ID Cards to help fight identity theft and safeguard taxpayer money. Starting in April 2018, CMS will begin mailing new Medicare ID Cards that include a new unique Medicare ID Number. CMS is planning to stagger the mailings throughout the year, with an expected completion date by April 2019.

To help you find information quickly and stay current with this transition, CMS designed a new homepage linking you to the latest details, including how to talk to your Medicare patients about the new Medicare Card. Bookmark the New Medicare Card homepage and Provider webpage, and visit often, so you have the information you need to be ready by April 1, 2018.

Washington Update

Preparing for a Wild September!
By Johanna Gray

Congress returns from its August recess on September 5th with a number of imminent deadlines and thorny policy issues before them. Here’s what we’re watching:

Federal Budget/Appropriations: Congress has to pass appropriations bills to fund the federal government, an increase to the debt ceiling and funding for financial assistance to help communities recover from Hurricane Harvey all by September 30th. Congress is expected to try to pass a short-term continuing resolution (when current funding levels are extended) through December to give them more time to negotiate levels for rest of the year. At the moment, a shutdown is possible because President Trump has said that he would not sign a funding bill if it doesn’t include sufficient funding for the border wall, which seems unlikely to materialize. It is unclear whether the shutdown would happen in September (he doesn’t sign the CR) or in December (he doesn’t sign the longer-term funding bill). The desire to provide funding to help with Hurricane Harvey may make a shutdown less likely.

Affordable Care Act/Health Reform: In early September, Congressional Committees will hold hearings on market stabilization and health reform more generally. On the ACA, there is increased momentum for bipartisan market stabilization legislation among some corners of Congress, even as some Republicans continue efforts to repeal the ACA. It looks like the bipartisan approach will include appropriations for cost-sharing reduction payments and potentially a pot of money for reinsurance, and likely changes to the Section 1332 waiver process, which we will need to watch closely. Congress will need to pass a reauthorization of the Children’s Health Insurance Program (CHIP) by the end of September, which may provide a legislative vehicle for an ACA bill.

340B Reform: It is unclear whether and when legislation might be introduced related to 340B reform. Discussion during the 340B hearing held earlier this summer and media reports since then suggest that some members of Congress would support legislation that would give HRSA explicit authority to regulate various aspects of the 340B program. But so far, no legislation has been released publicly. We will be closely monitoring and advocating to ensure that any potential policy changes don’t harm HTCs.

Regulatory: Meanwhile, the Trump Administration continues to have its own agenda for health policy. First, the Alliance will be commenting on the proposed policy that would reduce payments for 340B drugs dispensed by hospital outpatient departments. We will ask that CMS exempt clotting factor and other anti-hemophiliic factors from the rule. Also, the Administration will continue to shape the implementation of the ACA (unless and until it is repealed). Each month (unless Congress appropriates funding) the Administration has to decide whether to pay the cost-sharing reduction payments to insurers as called for by the ACA. It will also be preparing for open enrollment for the 2018 plan year, which kicks off on November 1. They have just announced that they are significantly reducing funding for advertising for outreach and enrollment activities (from $100 million to $10 million), for example.

Notes From the Community

Update from the Hemophilia Alliance Foundation
By Joyce Strazzabosco, Chair of the Hemophilia Alliance Foundation

When the Hemophilia Alliance was formed, members expressed an interest in having discretionary funds that might be generated put back into the hemophilia community. In 2008, a Grants Committee of the Alliance was organized. Seven volunteers were recruited representing the diverse disciplines and geographic regions of the hemophilia community. That group set about defining what kinds of grants would be given, and what process would be used to call for grant applications and to determine criteria for awarding the grants. The first grants were given in March of 2009.

In 2013, the Hemophilia Alliance Foundation was created as a separate nonprofit corporation. It is still governed by a board of seven volunteers, each of whom has a background that links them to the hemophilia community. In 2016, a Grant Guidance was developed to serve as a helpful resource to applicants. Each year, new questions help the board refine the criteria against which the applications will be assessed. The current Grant Guidance is available on the Foundation’s website:

The board of the Foundation meets in person once a year. It reviews any new trends and issues that might affect the applications, and identifies changes for the Grant Guidance. The updated Guidance is published on the Foundation’s website by December 1 of each year. Applications are due by January 31 of the following year. The board members read the applications, and hold a conference call to determine the awards. Applicants are notified by mid-March and the checks are sent at that time as well. The grant year is April 1 through March 31.

Between 2009 and 2017, the Foundation gave out grants totaling $3,928,533. Most of the funds came from the Hemophilia Alliance. In 2013, the Alliance Pharmacy also began contributing to the Foundation as well.

The current board members are: Susan Karp, RNMS, San Francisco, CA; Michael Craciunoiu, Indianapolis, IN area; Brenda Riske, MS, MBA, MPA, Denver, CO; Crystal Sallans, LCSW, Houston, TX; Anjali Sharathkumar, MBBS, MD, MS, Iowa City, IA; Chad Stevens, Newdale, ID; Joyce Strazzabosco, Chair, Palmyra, NY.

Alliance Update

Updates about Alliance Meetings in 2017 and 2018
By Sean Singh

Fall Members Meeting 2017

With all the changes happening in Washington, DC, we will have lots to talk about together at the Fall Members meeting. It seems as though not a day goes by without some new information about healthcare. The next members meeting will be in San Diego, CA, on September 17-19, 2017.

We will be meeting at The US Grant Hotel, located at 326 Broadway, San Diego, CA , 92101. We have past the cut off date for the hotel. Please contact me with any concerns about booking a room.

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Meeting for CPR+ Users after Member Meeting

The Hemophilia Alliance has been in discussion with Mediware about working with our member users. Mediware has agreed to San Diego and participate in a special session the morning after the Member Meeting (Wednesday, September 20th from 8:30 am to 11:30 am). A team of people will be coming to will listen to our concerns and see how they can make CPR+ work better for us.

Please email me at and let me know if you are able to attend the CPR+ session so we can plan accordingly. We have also been asked to prepare a top 15 list of issues to send in advance of the meeting. Please let me know if you have any specific questions or concerns.

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Save the Dates for 2018

Please make a note and block your calendars for an exciting year of meetings in 2018:

  • January 22-23 – Board Meeting
  • March 18-20 – Spring Members Meeting
  • September 23-25 – Fall Members Meeting

Information for the social workers meeting will be published in August 2017. The planning committee will be meeting during the summer to determine the dates of the meeting and the topic.

We are waiting for the congressional calendar to be published for 2018. Once we have that information we will announce the Hill Day visits which will be combined with a Physician-led meeting and an Introduction to 340B for new Alliance members and folks who want a refresher on the basics.

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Team Alliance Contact Information

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

Joe Pugliese……215-439-7173
Sean Singh……727-388-7326
Jeff Blake……317-657-5913
Elizabeth Karan……202-466-8960
Roland Lamy……603-491-0853
Audra Ames……727-415-6397
Ellen Riker……202-484-1100
Johanna Gray……202 484-1100
George Oestreich……573-230-7075