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‘Tis the Season

While hunters go after various game this time of year, it seems that some health insurance companies go after vulnerable patients – especially those with rare and chronic diseases.  This season patients with primary immunodeficiency diseases who are members of Coventry Health Care and its subsidiaries in Pennsylvania, Missouri and Illinois seem to be the primary target.

In October, IDF became aware of Coventry’s change in policy to force all Coventry member patients on IVIG to use one brand of immunoglobulin (Ig) product and only one brand.  In the immortal words of Casey Stengel, it was a “déjà vu all over again”.  After partially beating back a similar policy attempt last spring with Highmark Blue Cross- Blue Shield, we thought that we would not see such an attempt again – wishful thinking, it turns out!

IDF immediately reached out to Coventry with a letter to the Chief Medical Officer of Coventry’s subsidiary, HealthAmerica, in Pennsylvania.  We expressed concern that a policy which forces patients who are stabilized on an Ig product to switch to another product without medical justification was dangerous.  The letter pointed out the studies, medical evidence and IDF surveys that point out that of adverse reactions that occur with IVIG, about one-third of them occur when trying a new product.  IDF got no response. More letters, emails and phone calls were made over the course of the next several weeks to several policymakers within Coventry – still no response from Coventry.

Meanwhile, the effective date of December 1st was getting closer and closer.  In the face of being stonewalled, IDF took several actions.  We developed a media initiative called www.InsurersAreNotDoctors.com focusing on Pennsylvania as a way to gain attention and educate the public on Coventry’s total disregard for patient safety.  We initiated a call to action to the PIDD community using the IDF Action Alert system to send hundreds of emails to Coventry’s Chief Medical Officer.  In addition, IDF asked some of its many friends on Capitol Hill to intervene – and intervene they did.  Soon thereafter, Coventry contacted IDF to discuss the policy and its implications.

It was during this initial discussion between IDF’s medical advisors and the chief medical advisors of Coventry that IDF learned that the policy was even worse than had been thought.  Adding insult to injury, not only would patients using IVIG be switched to a different product, but patients using Ig subcutaneously would be switched back to IVIG – no exceptions. To say that our medical advisors were astounded is a vast understatement.

It remains to be seen whether there will be changes to Coventry’s Ig policy.  It is too soon to say as the media initiative and political pressure continues and is stepping up.  IDF is in this for the long haul.

It is unconscionable for health insurers to jeopardize the health of patients just to increase their profit.  It is questionable how many dollars will actually be saved as patients who are switching to a new product should have their first several infusions with a new product in a clinical setting under the direct supervision of a physician. And, unfortunately, there will be additional medical costs as a result of adverse reactions suffered by some patients.  It is not a question of “If?”, it is only a question of “Who?” and how severe the reactions will be.

Visit www.InsurersAreNotDoctors.com .  Learn what IDF is doing.  Sign up for the Action Alert to let Coventry know you oppose their Ig policy.  If you have ever had an adverse reaction to an Ig therapy when switching to a different product, contact:  iand@primaryimmune.org .  If you are a Coventry member anywhere in the U.S. and want to help, please contact us at the email address above.  Together we can put up a united front against the patient hunters!

 

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By IDF_Emily – December 13, 2011

Federal Policy: Where Are We?

As we head into the Fall political season, it is a good time to review and update where things are with respect to IDF’s public policy efforts at the Federal level.

IDF and its volunteers have made great strides in our drive to pass the Medicare IVIG Access Act. Through the efforts of IDF volunteers and staff, there are now 43 bipartisan co-sponsors to Congressman Brady’s (R-TX) House bill, HR 1845, and 9 bipartisan co-sponsors to Senator Kerry’s  (D-MA) Senate companion bill, S. 960!  This is a phenomenal increase in four short months from the 14 original House and two original Senate co-sponsors who had signed on to the bills at introduction.

Volunteer letters and phone calls coupled with meetings by IDF staff have been a winning strategy to gain recognition and awareness of our legislation on Capitol Hill.  In addition to the continuing addition of co-sponsors, the Medicare IVIG Access bills are now on the “radar screen” of the legislative leadership in both the House and the Senate.  In the House, Representative Brady has made HR 1845 one of his top legislative agenda item and is working hard to gain support from the Speaker and other members of the House’s Republican leadership.  On the other side of the aisle, Representative Matsui is working hard to keep the bill visible and gain other co-sponsors.  On the Senate side, Senator Kerry continues to keep the issue visible among his colleagues and Senate leadership.

Generally, legislation is bundled together and passes as part of a larger package.  Therefore,  our advocacy efforts include identifying appropriate legislative vehicles to add the Medicare IVIG Access Act.  There are several potential avenues.  One vehicle could be whatever legislation that may come out of the Joint Select Committee on Deficit Reduction, or what you may have heard called the ”Debt Super Committee,” that was created as a part of the deal to increase the debt ceiling and address the Nation’s deficit. It is expected the Super committee will be dealing with Medicare issues as they work to reduce the deficit.  Our legislation is attractive because it costs little and provides a “pay for” that could save Medicare $200 million+.  Senator Kerry and Representative Chris Van Hollen (D-MD) are both sponsors of our bills and are also members of the select 12 legislators on the Debt Super committee.  It is also quite possible that there may be two other Medicare legislative vehicles between now and Christmas that may be the perfect fit for our legislation.

IDF has also been very concerned the health care reform law (Affordable Care Act – ACA) passed in 2010 be implemented in a way that will help and not hinder patients with rare and chronic diseases like primary immunodeficiency diseases.  IDF and fellow patient organizations who use plasma products (Alpha-1, Antitrypsin Deficiency (Alpha-1), Guillain-Barré syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) ; Hemophilia, and Immune Thrombocytopenia (ITP))  are working together as part of the American Plasma Users Coalition (A-PLUS) to fight to make sure patients will have access to the care they need, when they need it, and in the setting most appropriate for the individual patient.   IDF and A-PLUS have been meeting and communicating with policy decision makers on issues such as the creation and development of State Health Exchanges, what constitutes the “essential benefits” that all insurance policies should cover and many other provisions that must be implemented before the health law goes into effect,  January 1, 2014.

IDF and A-PLUS have also been very active in monitoring legislation and regulations, as well as actively raising questions regarding the various debt related discussions that dominated the summer and will continue to dominate the next couple of months.  Several ideas that are being discussed involve cuts to Medicare benefits that are of particular concern for our patients.    These ideas include reducing reimbursement for IG therapy, moving coverage of IG therapy in the home away from Part B of Medicare to Part D of Medicare and curtailing first dollar coverage of MediGap policies.  Medicare beneficiaries are currently able to offset their 20% co-insurance requirement in Part B by purchasing an insurance policy that will cover the coinsurance requirement. All of these actions would undoubtedly hurt Medicare patients with primary immunodeficiency diseases.

We have recent history and experience to know that reducing reimbursement for IVIG will all but force our patients to go to only hospitals for IVIG as these will be the only facilities that will be able to afford to treat patients with primary immunodeficiencies.  Moving immunoglobulin replacement therapy from Part B to Part D will most probably significantly increase patient out-of-pocket costs due to co-insurance percentage increases, restrictive formularies and the “doughnut hole” co-pays.  Curtailing first dollar coverage of Part B services by eliminating or severely curtailing MediGap supplemental insurance could also significantly increase out-of-pocket costs to some patients.

IDF, using its own resources, working with and leveraging the resources of other plasma user patient groups and with the active support of IDF volunteers, will continue to smash the obstacles and roadblocks to access to patient care on behalf of patients with primary immunodeficiency diseases.  Like with our peer support, awareness and fundraising, volunteer support for IDF’s advocacy efforts is critical to ensuring the success of our initiatives.   Thank you to all who have already shared your time and self on behalf of the community.  Please complete the Action Alert in support of the Medicare IVIG Access Act and contact IDF if you are interested in doing more to support our public policy efforts. Every voice is critical to our efforts!!

-Larry

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By IDF_Emily – September 26, 2011

IDF 2011 National Conference: HOT! HOT! HOT!

The IDF 2011National Conference was HOT! HOT! HOT!  It was HOT outside the conference center in Phoenix (110 – 116 degrees everyday) and HOT inside with patient excitement and enthusiasm.  And the Advocacy Breakfast Symposium was on fire!!

The Advocacy Breakfast on Saturday morning was jammed with highlights of the activities  IDF has been involved in  over the past two years.  It is amazing what IDF has been doing on the advocacy and public policy front!  Besides lobbying on IDF’s Medicare IVIG Access bill in Congress, IDF has been actively engaged in working to get newborn screening for Severe Combined Immune Deficiency (SCID) in all 50 states.  Volunteers have been active with many successes in 30 states and more are on the way.

IDF has confronted two insurance companies whose policies were detrimental to patients with primary immunodeficiency diseases.  Minnesota volunteers rallied to fight Blue Cross-Blue Shield Minnesota for better IgG guidelines and no systematic denials of care.  Pennsylvania volunteers joined forces to fight a one brand only, “fail first” formulary and the wholesale switching of patients to only one brand of IgG therapy.  IDF has vigorously supported efforts to fight the cost shifting policies of the insurance industry

And IDF has been extremely active advocating for fair and equitable implementation polices of the recently passed health care reform law.  Working alone and in coalition with other plasma using patient groups ,the American Plasma Users Coalition(A-PLUS), IDF has spoken on behalf of patients regarding what constitutes Essential Benefits, the Pre-existing Condition Insurance Program , State Health Exchanges and Biosimilars (generic biologics).

A highlight of the Advocacy Breakfast at the National Conference was the presentation “What You Need to Know about The New Health Reform

A patient addresses the Advocacy Breakfast speakers during Q&A

Law” by Lisa Codispoti, an IDF Board member.  She explained the provisions of the law and its potential effects on patients.  She emphasized that while there still are many imperfections with the law, certain provisions – like the elimination of denial of coverage because of pre-existing conditions, elimination of lifetime and annual caps and coverage of children up to 26 on a parent’s insurance policy – are huge advances and protections for the primary immunodeficiency community.  To view Lisa’s presentation go to the IDF Advocacy Center page and look under Our Featured Stories.

Julie Birkofer, Vice President of the Plasma Protein Therapeutics Association, thrilled the audience with her calls for more advocacy participation.  She also handed out hundreds of huge buttons calling for the support of our Medicare IVIG Access legislation (HR 1845.S 960) in Congress.

And speaking about our HR 1845 and S 960 Medicare IVIG Access legislation, Sue Ramthun, IDF’s legislative consultant, outlined the legislation and what needs to be done going forward.

The audience at the Advocacy Breakfast was enthusiastic and energized.  They pledged to sign up, join and participate in IDF’s Action Alert system to let policy makers like Congress, State Legislatures, Governors and insurance companies and regulators know that the primary immunodeficiency community will stand up for their rights and interests.  WE ARE NOT GOING AWAY – SO DEAL WITH US!!!

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By IDF_Emily – June 29, 2011

We’re back! IDF 2011 Advocacy day–May 26!

Rep. Kevin Brady with IDF volunteers Jerry Shorten, Karissa Marson, and Carol Ann Demaret at IDF 2011 Advocacy Day

IDF is on Capitol Hill once again for the IDF 2011 Advocacy Day! We have 74 patients and family members from 26 different states making the rounds to their Congressional offices today. Their mission – to bring awareness to primary immunodeficiency diseases and ask their Members of Congress to solve the problems of access to IVIG for Medicare beneficiaries with primary immunodeficiency diseases by supporting HR 1845/S 960, the Medicare IVIG Access Act.

Yesterday, the volunteers participated in a training for their meetings and were treated to some words from IDF’s legislative champion, Congressman Kevin Brady (TX-8) who is the lead sponsor of the legislation in the House.  This year for the first time, IDF also held a training program specifically for teens and young adults called Raise Your Voice!  Fourteen young people from 11 states participated in the training and are accompanying their parents on the Hill today.  These teens and young adults are just some of the many fresh faces that are participating in Advocacy Day this year.  With about 30 individuals participating in Advocacy Day for the first time, many Members of Congress and their staff will be hearing about primary immunodeficiency diseases for the first time today!

We are so thrilled to be putting on this event again this year, and we are extremely confident that many of these meetings will translate into co-sponsorship and support of both our house and Senate bills, HR 1845/S960 the Medicare IVIG Access Act!

Below, we hope that participants of the event will share their experiences with live updates from the Capitol.  So, how is your day going?

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By IDF_Emily – May 19, 2011

Coming Close Only Matters in Horseshoes

As my father used to tell me, “Coming close only matters in horseshoes.” And, the process of trying to pass legislation in Congress is definitely not the game of horseshoes. But, IDF’s Medicare IVIG demonstration project legislation did get “close” to being passed by the Senate at the close of the 111th Congress.

IDF’s volunteers have been pushing hard for the last several years to allow IVIG infusions in the home setting for Medicare patients.  Currently Medicare will only pay for the immunoglobulin, but will not pay for a nurse or other items and services that are needed to be safely infused in the home.

The original bill supported by IDF provided for a permanent fix of the home infusion problem.  Because the cost of a permanent fix was not known, that approach, unfortunately, did not gain “traction”.  In 2009 at the height of the health care reform debate, Senator Kerry (D. MA) filed an amendment both during committee consideration and the Senate floor debate to authorize a three year demonstration project.  Such a project would answer the “cost” questions and would provide IVIG home services to Medicare patients.  Senator Kerry was not able to offer the amendment last fall.

IDF’s attention in 2010 was to push for access to home infusion for individuals with primary immunodeficiency diseases.  The result was introduction of HR 5597 in the House,  sponsored by Congresswoman Matsui (D- CA), Congressman Kevin Brady (R-TX) and 34 other House Members.  The language of HR 5597 was identical to Senator Kerry’s filed amendment from the previous year.   IDF volunteers swarmed Capitol Hill on Advocacy Day in support of HR 5597 and over 1000 letters were sent to legislators through the IDF Action Alert system.  IDF volunteers also met with Congressional staff and Members in their home offices.

One of the things different this year was IDF’s penetration of the Democratic House leadership.  By October, we had the interest of the Majority Leader Steny Hoyer (D.MD).  Assistant to the Speaker, Representative Chris Van Hollen (D. MD) became one of our leading co-sponsors. Numerous meetings and conversations with them and Ways and Means and Energy and Commerce staff members raised the visibility of our issue.  Our legislation was now on the House Leadership’s radar screen.  By Thanksgiving, it was clear that the Senate would be the chamber to “drive” the actions of the “lame-duck session,” rather than the House.  Our attention turned to the Senate in earnest by early December.

IDF met with Senator Kerry’s staff, staff from both of the Senate’s health policy committees and finally with the Senior Health Policy staff person for Majority Leader of the Senate Harry Reid (D. NV).  It was during the meeting with Leader Reid’s staff person in early December that we had a breakthrough.  It would be a long-shot but Leader Reid and Senator Kerry thought it would be at least worth the try.  The plan was to put together a few very small Medicare issues (like our IVIG issue) together into what is known as a “unanimous consent” (UC) bill.

As its name describes, a UC bill must be passed by the entire Senate wtihout objection.  It is a way to speed up the business of the Senate by allowing non-controversial bills to be voted upon without debate. And then there is the “Christmas tree effect” which occurs when a Senator withholds support because he/she has legislation (an ornament, if you will) that they would like to have added to the UC bill or “hung on the Christmas tree.”

It appears that the tiny Christmas tree UC bill had too many ornaments and collapsed.  Thus was the demise of our IVIG legislation for this year.  The irony was that the House was ready to take it up if it had passed from the Senate and sent to the House.

The 112th Congress has now convened with 100+ new members of the House, several new Senators and a Party leadership change from a Democratic party controlled House to a Republic controlled House.

The good news is that IDF will not be starting from scratch.  Because of the recent IDF efforts and those of Senators Reid and Kerry, we are in a stronger position going in to the 112th Congress than just a couple of years ago. In the House, the key Energy and Commerce (E&C) committee will be chaired by Rep. Upton (R-MI6th) and new Chairman of E&C’s Subcommittee on Health, Rep. Pitts (R-PA 16th), both cosponsors of the IVIG bills.  Our very great and avid supporter Rep Kevin Brady (R.TX) will also attain greater seniority on the Ways and Means
Committee.

IDF volunteers have made all of the difference in the world.  Every time when constituent pressure on a legislator was needed, IDF volunteers “stepped up”.  Without volunteer action, we would be nowhere.  We were close to success in the 111th Congress.  Now we just need a “ringer” in the 112th!!!

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By IDF_Emily – January 5, 2011

IDF says NO to Immunoglobulin Generics

Marcia Boyle, President and Founder of IDF, was one of three people representing patient organizations to speak at a 2-day Food and Drug Administration (FDA) public hearing to receive input regarding how the FDA should implement a recent law establishing a shortened process for certain biologic products to get to the marketplace. Basically, the discussion centered on, “What is the best way to introduce generic biologics into the marketplace.”

Marcia Boyle, President and Founder of IDF, Presenting at the FDA Meeting on Biosimilars

Of course, a shortened approval pathway for biologics raised red flags for IDF.  IDF is committed to act and advocate on behalf of the PIDD community. 

You probably know that in traditional pharmaceutical chemical based manufacturing there must be years of research, development and testing for safety before reaching the marketplace – an expensive process.  Generic manufacturers take the chemical formula and manufacture an “equivalent” drug without the expense of the research.  Hence generic drugs are less expensive than brand drugs.

Until now, biologics (drugs that are derived from animal products or other biological sources) have had to follow strict research, development and clinical testing guidelines before receiving FDA approval.  However, Congress recently approved and authorized the FDA to develop a shortened approval pathway for the generic equivalent to biologics – “biosimilars.”   This is vital to the PIDD community because immunoglobulin is a biologic.  Link to Congressional Research Services background report on Biosimilars

Marcia’s testimony (link to read testimony) expressed various concerns to the FDA panel about the potential safety hazards to patients with primary immunodeficiency diseases (PIDD) of creating shortcuts to the manufacturing of products like immunoglobulin.  She urged the FDA to follow the lead of the European Medicines Agency (EMA) and exclude immunoglobulins from the biosimilars pathway altogether. 

She urged the panel to require human clinical studies (not just animal studies) of all biologics to demonstrate that a generic biologic (biosimilar) is safe. For patients with PIDD, the notion of being forced to be infused with a drug that has never been tested on a large cohort of people is toxic.  She stressed that even with clinical trials there needs to be a strict surveillance system in case there are problems down the road. 

As a case in point, Marcia noted that even after the FDA approved a manufacturing change, a major immunoglobulin manufacturer, who knows the business well, had to voluntarily withdraw its immunoglobulin product worldwide because of a significant increase in thromboembolic events  – just because of a manufacturing change which produced structural differences in the immunoglobulin product.  It is hard to imagine what would happen with a generic immunoglobulin manufacturing company with no experience in the plasma product world and no clinical studies to test whether the product is safe for patients with PIDD.

This hearing was the first step in the FDA process of defining rules and regulations regarding a pathway for biosimilars into the marketplace.  Rest assured that IDF will be very active in the process to assure that patients with PIDD are protected.

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By IDF_Emily – November 9, 2010

PPTA-FREE webinar on Healthcare Reform provisions

PPTA and members of the State Affairs Steering Committee are presenting the third program in the Health Reform Webinar series aimed at delivering information to consumers about how the new health reform law will affect individuals with rare, chronic conditions. The free program is designed to help consumers understand what these terms and provisions mean and how the delivery of health care and access to therapies may be affected by the federal law. Sign up today!

Thursday, October 21, 2010 from 2:00-3:00 p.m. Eastern

Subjects

  • Medicaid Expansion
  • Individual Mandate

Register
To register for this free Webinar, please email Karen Graves at PPTA. Space is limited, so please register quickly! Registrants will receive the information regarding the website link and toll free number to call in order to participate.

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By IDF_Emily – October 14, 2010

PPTA offers FREE Health Reform Webinar for Ig Users

It has been several months since the health care reform bills were passed into law, but much confusion remains about what different provisions mean for patients with PIDD. The Plasma Protein Therapeutics Association (PPTA) is offering a FREE webinar series focusing on the impact of health reform access to appropriate care for individuals with rare, chronic conditions such as bleeding disorders, alpha-1 antitrypsin deficiency and primary immune deficiencies. 

The next program in this new webinar series is September 23, 2010 at 2:00 p.m. (Eastern) and will examine state exchanges, whether guaranteed issue equals guaranteed affordable and medical loss ratios. The information will be tailored for consumers of plasma protein therapies who have rare, chronic diseases and conditions, answering questions including what do these terms really mean? and, what will they mean for you, your physician and your treatment?

 This webinar is hosted by the Plasma Protein Therapeutics Association (PPTA) and its members and will be presented by experts on the law and how it will be implemented.

Date: Thursday, September 23, 2010

Time:  2:00 – 3:00 p.m. Eastern

 Topics: 1) State exchanges

 2) Whether guaranteed issue equals guaranteed affordable

 3) Medical loss ratios

 Register:  Email Karen Graves, PPTA, (kgraves@pptaglobal.org)

Registration is free, however space is limited—sign up today!

Registrants will receive the information regarding the website link and toll free number to call in order to participate.  Feel FREE to take advantage of this opportunity to learn more about what health care reform means to you and your family (Did I mention the webinar is free?). 

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By IDF_Emily – September 2, 2010

IDF Volunteer Action = More HR 5597 Co-Sponsors

IDF Volunteers Ginny Job and Tommie Cassen with cosponsor Rep. Dennis Moore (KS) on Advocacy Day

It was just over a month ago when Congresswoman Doris Matsu (D-CA) and 7 original co-sponsors introduced HR 5597, the Medicare Patient IVIG Access Demonstration Project. Because of the efforts of IDF volunteers and members of the PIDD community, there are now 28 co-sponsors with more on the way. What has been fascinating over the past month is activity on the part of all members of the PIDD community.

The systematic follow-up by IDF Advocacy Day volunteers this year has been phenomenal and unprecedented.  They have sent Thank You notes to people with whom they met on Advocacy Day.  They have sent follow-up reminders to staff.  They have called staff.  They have sent Action Alert letters. Of the 22 co-sponsors (as of this writing), 12 are directly related to Advocacy Day volunteers.  Never have we had this type of concentrated effort.  And it is paying off!!

Whoever said that sending Action Alert letters doesn’t mean anything?  There are 5 new co-sponsors whose only contact with IDF is through the letters they have received from our Action Alert system. They were not visited on advocacy Day.  We don’t know of anyone from IDF who has had had contact with them prior to receiving Action Alert letters.  Our only conclusion is that they responded to constituents who wrote them through our Action Alert.  We do know that one new co-sponsor contacted an IDF letter writer for more information and subsequently became a co-sponsor. 

It is amazing the number of people who believe that their letters don’t count.  They do!!!

Another volunteer who couldn’t go to Advocacy Day met with her Representative’s staff in her home district and then repeatedly followed-up until the Representative called her personally to tell her that he will be a co-sponsor.  There is nothing like tenacity.

Four of our new co-sponsors (and at least two more are pending) came by way of conversations with our industry supporters  who feel just as strongly about the justice of HR 5597 as do patients and families.  And, we thank them for their continued strong active support of the PIDD community.

People always ask, “What happens next with the bill”?  We anticipate that before the end of 2010 (and after the November elections), a health care bill will emerge that we hope will be the legislative vehicle for the IVIG demonstration project.   HR 5597 will not be voted up or down on its own.  Rather it will be offered as an amendment to a larger health care bill.

Between now and whenever such a bill comes under consideration, IDF and friends need to keep momentum by gaining more co-sponsors and spreading the word through every means of communication – IDF Friends, Common Ground, Facebook, Twitter and even old fashioned letters to editors, legislators and whomever may listen and be helpful to the cause.

Thanks for all of your work!!  And, let us all keep at it to get more co-sponsors and keep the dialogue moving along!!!! 

Here’s the current list of Co-sponsors of HR 5597:

Rep Blackburn, Marsha [TN-7] – 7/13/2010 Rep Brady, Kevin [TX-8] – 6/24/2010
Rep Braley, Bruce L. [IA-1] – 6/24/2010 Rep Butterfield, G. K. [NC-1] – 7/30/2010
Rep Cohen, Steve [TN-9] – 7/30/2010 Rep Davis, Danny K. [IL-7] – 8/10/2010
Rep Deutch, Theodore E. [FL-19] – 7/28/2010 Rep Ehlers, Vernon J. [MI-3] – 7/19/2010
Rep Fudge, Marcia L. [OH-11] – 7/28/2010 Rep Gerlach, Jim [PA-6] – 6/24/2010
Rep Jenkins, Lynn [KS-2] – 8/10/2010 Rep Kildee, Dale E. [MI-5] – 7/13/2010
Rep Kind, Ron [WI-3] – 7/28/2010 Rep Marshall, Jim [GA-8] – 7/13/2010
Rep McGovern, James P. [MA-3] – 7/1/2010 Rep Moore, Dennis [KS-3] – 7/19/2010
Rep Nunes, Devin [CA-21] – 7/22/2010 Rep Paul, Ron [TX-14] – 7/28/2010
Rep Pitts, Joseph R. [PA-16] – 6/24/2010 Rep Richardson, Laura [CA-37] – 7/30/2010
Rep Rothman, Steven R. [NJ-9] – 7/30/2010 Rep Ruppersberger, C. A. Dutch [MD-2] – 7/28/2010
Rep Rush, Bobby L. [IL-1] – 6/24/2010 Rep Schwartz, Allyson Y. [PA-13] – 7/13/2010
Rep Terry, Lee [NE-2] – 6/24/2010 Rep Thompson, Bennie G. [MS-2] – 7/28/2010
Rep Titus, Dina [NV-3] – 7/28/2010 Rep Van Hollen, Chris [MD-8] – 6/24/2010

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By IDF_Emily – July 29, 2010

Medicare IVIG Access Demonstration Project Bill Introduced

IDF President and Founder Marcia Boyle with Rep. Matsui on IDF Advocacy Day 2010

Medicare IVIG Access Demonstration Project Bill Introduced

The work of the IDF Advocacy Day volunteers has paid off as Congresswoman Doris Matsui (D-CA) has introduced HR 5597, the Medicare Patient IVIG Access Demonstration Project with 7 bipartisan original co-sponsors: Rep. Kevin Brady (R-Texas), Rep. Chris Van Hollen (D-Maryland), Rep. Lee Terry (R-Nebraska), Rep. Bobby Rush (D-Illinois), Rep. Jim Gerlach (R-Pennsylvania), Rep. Bruce Braley (D-Iowa), and Rep. Joseph Pitts (R-Pennsylvania).  All of the co-sponsors of HR 5597 are a result of meetings on Advocacy Day with IDF volunteers.  And with your help, we expect others to join as co-sponsors now that HR 5597 has been introduced!

IDF thanks Congresswoman Matsui for her dedication and commitment to solving the problem Medicare beneficiaries have in obtaining their IVIG therapy in the home setting.

Write to your Representative

You can help us gain more co-sponsors by contacting your Representative using the IDF Action Alert, sending an email to your Representative asking him/her to be a co-sponsor of HR 5597 and explaining why you are so concerned.

Demonstration Project Provision

HR 5597 establishes a Medicare demonstration project that would enroll up to 4,000 Medicare beneficiaries who are patients with primary immunodeficiency diseases (PIDD) and allow for payment for IVIG therapy in the home setting.  While Medicare will pay for immunoglobulin (IgG) in the home setting, current law forbids Medicare from reimbursing for nursing services and other items necessary for infusing in the home making the current benefit hollow and inaccessible to most Medicare beneficiaries.

Obstacles to Care Study Provisions

In addition to the home infusion provision, the bill also requires the Department of Health and Human Services (HHS) to analyze and issue a report to Congress regarding other IVIG problem access issues which have become obstacles to immunoglobulin therapy to all IVIG patients whether they be patients with PIDD or other disease and chronic conditions.

HHS must provide an analysis of the appropriateness of implementing a new methodology for payment for intravenous immune globulins in all care settings.  They would also be required to provide an analysis of the feasibility of reducing the lag time with respect to data used to determine the average sales price of immune globulins.  And HHS would be required to update the 2007 report entitled ‘‘Analysis of Supply, Distribution, Demand, and Access Issues Associated with Immune Globulin Intravenous (IGIV)’’, issued in February 2007 by the Office of the Assistant Secretary for Planning and Evaluation of the Department of Health and Human Services.

To learn more about the specifics of the bill, check out the IDF Advocacy Center page on Medicare Patient IVIG Access.

Act Now Via the IDF Action Alert

Tell your Representative that you support IVIG access for all patients with PIDD – Use the IDF Action Alert to ask your Representative to co-sponsor and actively support HR 5597!

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By admin – June 25, 2010