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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?). 

Posted in Health Care Reform, PIDD.

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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

Posted in Advocacy, Medicare.

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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!

Posted in Medicare.

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By admin – June 25, 2010

Hats Off to Secretary Sebelius!! And Now the Real Work Begins!!

We are thrilled that in record time, the Secretary of Health and Human Services, Kathleen Sebelius, announced that Severe Combined Immunodeficiency Disease (SCID) will be added to the 29 disorders on the core panel for universal screening of all newborns in the United States. This panel consists of disorders for which the Federal Department of Health and Human Services recommends each state provide for mandatory newborn screening. 

In January, the Secretary’s Advisory Committee on Heritable Disorder in Newborns and Children recommended to the Secretary that SCID be added to the core panel.  And now, SCID is the first disorder nominated by the committee to be added to the core panel of disorders since its founding in 2003. SCID is a primary immunodeficiency disease, commonly known as bubble boy disease. Affected infants lack the white blood cells that help resist infections due to a wide array of viruses, bacteria and fungi. Babies with SCID appear healthy at birth, but without early treatment, these infants cannot survive.

The Secretary’s recommendation will soon be communicated to all states and territories of the United States.  She will be urging states to change their policies to allow for SCID newborn screening.  One of the particularly interesting aspects of the Secretary’s recommendation is her request for a report, due in one year, which will outline how implementation of the addition of SCID to the newborn screening protocols is proceeding.  We need to prod the states to act quickly because she is monitoring their actions!

Through the IDF SCID Initiative, a project dedicated to address the acute need for SCID education, awareness, and diagnosis, IDF has been instrumental to add SCID to the newborn screening panel. Members wrote letters, testified and met with government officials to convince the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children to recommend the addition of SCID. 

Now the real work begins!  The IDF SCID Newborn Screening Campaign is underway with the goal to have each state add SCID to their protocols so the screening will actually take place!  Visit SCID Newborn Screening Campaign Headquarters to learn about this issue.  There is a SCID Toolkit complete with information and steps to take action in your own state.  If there are no campaign volunteer leaders in your state, we hope you will pick up the reins and start your own grassroots effort.

And, don’t forget to check out the Community in Action blog to see how individuals just like you are working to get SCID screening implemented in their home states.

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By IDF_Emily – May 28, 2010

IDF Advocacy Day 2010 ~ What a Day! ~ UPDATED 5/17/10

Advocacy Day UPDATE on Co-Sponsors! ~ 5/17/10

Thanks to all of the amazing Advocacy Day volunteers who spoke with legislators and then followed up with emails requesting sponsorship of HR 2002 and S 701 … *drum roll* … SIX new co-sponsors have signed on to S 701/HR 2002 since Advocacy Day!

Here is a list of the sponsors who have signed on since Advocacy Day and the dates they became official sponsors.

HR 2002                                                                                  S 701

Rep Green, Gene [TX-29] – 5/4/2010                         Sen Cardin, Benjamin L. [MD] – 5/13/2010

Rep Upton, Fred [MI-6] – 5/4/2010

Rep Melancon, Charlie [LA-3] – 5/4/2010

Rep Moran, Jerry [KS-1] – 5/12/2010

Rep Schauer, Mark H. [MI-7] – 5/4/2010

We have also received word that Congressman Chris Van Hollen has agreed to be an original co-sponsor on Congresswoman Matsui’s bill!  This is wonderful news as Congressman Van Hollen is the Assistant to the Speaker and one of the highest ranking members of the House.  What a wonderful ally for IDF in the fight for access to IVIG treatment!

Original Post:

IDF Advocacy Day 2010 was a remarkable day in many ways! Not only did we have a beautiful sunny day on Thursday, April 29, we also had some amazing meetings. In fact, over 50 IDF volunteers, representing states and districts with Members of Congress on committees of jurisdiction over Medicare and health policy, joined with team leaders and IDF staff to climb Capitol Hill. Their mission was to ask their Members of Congress to solve the problems of access to IVIG for Medicare beneficiaries with primary immunodeficiency diseases.

Ninety meetings were held, and 28 of those were with Members of Congress. We know, as of this writing, that we gained at least 3 House co-sponsors and 1 Senate co-sponsor. And we are confident that more co-sponsors will be signing on based on the positive accounts of IDF volunteers after their meetings.

NEWS FLASH: As I am writing this, Ginnie Job writes to say that Congressman Moran in Kansas will join as a co-sponsor of HR 2002. The Congressman met with Ginnie and Tommie Cassen. Great job Ginnie and Tommie, and Great News for the PIDD community!! In fact, Representatives Gene Green (TX), Charlie Melancon (LA), Mark Schauer (MI) and Fred Upton (MI) have officially signed on to HR 2002. Thanks go to IDF volunteers Karissa Ybarra and Maggi Dodd (Texas), Kimberly Buck (LA), and Kathi Beiswenger, Julie Fetch and Becky Wang (MI).

IDF Advocacy Day 2010 had a strong start Wednesday evening with an inspirational talk by one our advocate champions, Congresswoman Doris Matsui (CA), who joined the group to receive the IDF Public Policy Award. In her remarks, the Congresswoman announced that she will be introducing a new bill based upon the language of an amendment filed by Senator Kerry in the Senate. The proposed Medicare IVIG demonstration project would allow Medicare beneficiaries with primary immunodeficiency diseases needing IVIG to receive that therapy in the home setting. The bill also allows for various studies of other government obstacles to care for all patients needing IVIG.

Another NEWS FLASH: We just got word that Representative Chris Van Hollen (MD), one of the highest ranking members of the House, has agreed to be an original co-sponsor with Congresswoman Matsui on the proposed Medicare IVIG demonstration project and studies. We also know that Congressmen Braley, Terry, Rush and Fudge will also be cosponsors.

As soon as Congresswoman Matsui’s bill is introduced and receives a bill number, the IDF Advocacy Center will have the bill and its description posted online—so stay tuned!

What was different this year was the openness and understanding of many of the Members of Congress and their staff with whom the IDF volunteers met. It appears that the work undertaken by IDF volunteers in past Advocacy Days is paying off. Fifty percent of the IDF volunteers were multi-year veterans of previous Advocacy Days. Many of the Congressional staff were reasonably well versed in the subject and knew the issues.

Of course, there were appointments where people were hearing the stories of patients with primary immunodeficiency diseases for the first time. And those stories were powerful. One story was from 7-year-old Taylor Allen from Idaho. He told Senator Risch what his life was like before his IVIG. And then he told the Senator, with his eyes lighting up, that after he got his medicine he could go outside and play like all of the other boys. You could see the effect on the Senator.

There are a lot more stories, and you can see some of the photos of the day by visiting IDF’s new FLICKR page.

I hope that those who attended IDF Advocacy Day will write their experiences on this Blog. How did your day go?

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By admin – May 6, 2010

It’s Official: Health Care Reform is the Law of the Land

President Obama has now signed the health care reform bill into law. It has been a long, winding and wild journey to this historical point. I’ve been asked what the law means to the primary immunodeficiency diseases community. Well, some things are evident and others will evolve as the implementation process proceeds to the January 2014 date when most of the provisions kick-in.

In the article above this blog on the Advocacy Center page are provisions that take effect 6 months from President Obama’s signing of the legislation, including the end of health insurance companies dropping coverage for people after they get sick, the end to lifetime caps on coverage and the end to restrictive annual limits on coverage. Regarding the latter provision, beginning in 2014 all annual limits on coverage will be prohibited.

A concern of many is what to do about the health insurance coverage of children on PIDD who are growing up, graduating from college and entering the work force. In most cases now, young adult patients with PIDD have to get off their parents’ coverage when they turn 21 or 22. The new law allows young adults to continue their coverage on their parents’ policy to age 26 whether they are in school or not.

What remains to be seen is how the implementation of the new law will be conducted. IDF will be following that closely and intervening when appropriate to advocate on behalf of the PIDD patient community.

In the weeks and months to come, please keep checking the IDF Advocacy Center for updates and explanations of what the law of the land is and how it affects the PIDD community.

Posted in Health Care Reform.

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By admin – March 29, 2010

Hurry Up and Wait

Anyone who has been in the military or has rushed to an airport only to find that one’s flight has been delayed knows the feeling. You know, that feeling of being in overdrive, just to stop suddenly in your tracks and be placed “on hold” for an inordinate amount of time. Well, that’s where things are now with Health Care Reform (HCR) – “on hold.” The election of Republican Scott Brown to the Massachusetts Senate seat formerly held by the late Senator Edward Kennedy took the wind out of the sails of Health Care Reform as the Democrats lost their 60th vote – the vote to stop a filibuster. What happens now is anyone’s guess as leaders of both parties scramble to maximize their political positions.

The scenarios being painted on the rumor mill are plentiful and probably far-fetched. One holds that the House will just adopt the Senate bill as passed with no questions asked and no changes to the bill, and send it to the President for signature. Another is the House passes the Senate bill with an unwritten agreement to address differences between the bills and make changes in another bill later this year. A different version of this scenario is that the House and Senate leaders agree on changes in advance and use another bill as a vehicle to incorporate the changes.

Still another scenario is to let everything die and just do nothing. Another possibility is for House and Senate leaders to pare down the HCR bill to be an insurance reform bill only, but require all to obtain insurance coverage. And on and on and on…

Meanwhile, the various components of the health care system continue to limit access to care for patients with primary immunodeficiency diseases. Health care costs, premiums and out-of-pocket costs continue to climb, and inadequate reimbursements to physicians shrink the number of sites of care. We are all forced to just “Hurry Up and Wait!”

Posted in Health Care Reform.

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By admin – February 2, 2010

The Power of One

Oh, the Power of ONE. Generally people don’t believe it. They get discouraged. Yet, the Power of ONE is incredible. You may have seen the movie, the Power of One (1992). The Power of One is an intriguing story of a young English boy named Peekay and his passion for changing the world.

I have been reminded of its Power a multitude of times over the past few weeks and months. The ability of one person to make a difference is quite fantastic – especially in this mass culture where we are all expected to blend in and “stand in the corner and wear beige”. But the Power of ONE is tremendous and is as colorful as the prettiest spring flower.

For weeks/months, IDF has been working with Congress to get some relief on the Medicare IVIG Access issue. The only way to get any health care bill to pass this year is to make it part of the health care reform debate. Senator Kerry has been our champion in the Senate and has filed a floor amendment to establish a demonstration project over the next 3 years that will allow Medicare to pay for the necessary nursing services for IVIG in the home setting. But how did Senator Kerry become a champion? The Power of ONE. A Massachusetts parent of a child with PIDD called Senator Kerry’s local office and told her story to a staff person. The staff person listened. He was invited out to see an infusion. He went. He talked to Senator Kerry. It was the beginning of a relationship and the building of a champion for the Medicare Patient IVIG Access issue.

After Senator Kerry decided to file an amendment to the health care reform bill, IDF looked for co-sponsors. One of IDF’s volunteer advocates from Oregon, attended IDF’s 2009 Advocacy Day, and alerted the staffer in Senator Wyden’s office to the amendment. He was careful to maintain occasional contact. The IDF advocate asked Senator Wyden to be a co-sponsor of the Kerry amendment. He consented and now the amendment is referred to as the Kerry/Wyden et.al. amendment.

In Rhode Island, an IDF volunteer advocate used her contacts with Senatorial staff members with whom she met on Advocacy Day to persuade both Senators Reed and Whitehouse to co-sponsor and support the Kerry /Wyden amendment. Senators Reed and Whitehouse from Rhode Island became co-sponsors. And the same volunteer requested a meeting with the Governor of Rhode Island to inform him of primary immunodeficiency diseases. She met with him recently and had a productive meeting that could lead to Newborn Screening for PIDD in Rhode Island.

Another IDF advocate established a relationship around PIDD with a State Senator in Louisiana. The State Senator arranged for our volunteer advocate to have dinner with the Governor to educate him on PIDD.

A patient in New Mexico treated with IVIG in the home will have to join Medicare in January and will not be able to continue home infusions every four weeks. The nearest place to receive his IVIG is a 6 hour drive away. His infusion lasts 8 hours. Realizing that he will not be able to handle the 18 -22 hour ordeal, he contacted Senator Bingaman local office and told his story. The Senator’s office is working to help him find a way to continue home infusions. The Senator is also looking to support the Kerry/Wyden amendment.

There are many examples of individuals taking small steps that greatly impact the larger world. Thank goodness IDF has many people who exhibit the Power of One.

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By admin – December 11, 2009

Good News and Incomplete News

There is an old saying that there are two things one should never see being made — sausage and laws. I’ve seen both and they aren’t pretty.

The Senate Finance Committee passed out its version of health care reform yesterday – good news and incomplete news! The good news is there are various great insurance reforms.

The bad news is that there is no language regarding access to IVIG for Medicare patients with primary immunodeficiency diseases (PIDD).

Five Congressional committees now have reported out versions of health care reform legislation. The Senate Finance Committee bill and the Senate Health, Education, Labor & Pensions (HELP) Committee bill will be combined in some fashion by Majority Leader Harry Reid (D-NV) and sent to the floor for debate, amendments and final passage or defeat by the whole Senate. The same process will occur in the House of Representatives with their three bills.

The good news for patients with PIDD, as well as for everyone else, is that all 5 of the bills contain provisions that eliminate the pre-existing exclusions that most current health insurance policies contain. All of the plans will be guaranteed access and renewable. In other words, no one can be turned down due to health status.

All of the bills also eliminate lifetime and annual caps on benefits. And all of the bills provide annual out-of-pocket (OOP) cost protections. The House Energy & Commerce Committee capped annual OOP costs at $5,000 per individual and $10,000 per family. The Senate Finance committee capped OOP costs to conform with the current law level for Health Savings Accounts (HSA), which is approximately $6,000 per individual and $12,000 per Family.

All of the bills move toward community rating. That is, they reduce the amount of premium discrimination that is allowed. For example, the Senate HELP bill allows that the most expensive premium that can be charged in a plan can only be twice the amount of the least expensive premium, or a 2 to 1 ratio. On the other hand, the Senate Finance committee allows the most expensive premium to be 6 times as much as the least expensive premium or a 6 to 1 ratio.

These are all good things that will benefit our patient community. However, our premier issue regarding Medicare patient IVIG access, especially in the home setting, still has not been resolved. In the House, Congresswoman Matsui received a commitment from Energy & Commerce Committee Chairman Waxman to continue to work to fix this problem. Senator Kerry got a similar commitment in the Senate. IDF is working closely with the staff of Senator Kerry and Congresswoman Matsui. Hopefully, there will be an IVIG provision in both bills.

The expectation is that in the coming weeks, both chambers of Congress will vote on their respective bills. Then there still is another step to go before legislation can go to the President for signature – Conference Committee. It is quite probable and normal that the bills from the House and Senate will be similar but not the same as one another. A Conference Committee of House and Senate leaders will meet to iron out the differences between the bills and present exactly the same bills to be voted on a final time by both chambers. Only then can a bill be sent to President Obama.

There is a lot more time for sausage making!

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By admin – October 19, 2009

Senator Kerry Authors IVIG Access Amendment for Senate Finance Committee

It’s Wednesday, September 23rd and things have been a blur for the past couple of days. It started late Friday afternoon of the 18th when IDF learned that Senator Kerry, our champion in the Senate for patient IVIG access, continued to be our supporter by filing an IVIG access amendment (Kerry C-5) to the new healthcare proposal that was introduced by Senator Max Baucus (D-MT), Chairman of the Senate Finance Committee. The amendment incorporated key provisions from Senators Kerry and Alexander’s, S 701, Medicare Patient IVIG Access Act.

The Kerry Amendment C-5 makes “whole” the part B home infusion by adding the items and services that are needed to infuse patients with PIDD in the home setting that are currently excluded from payment. It also requires the Assistant Secretary of Program Evaluation (ASPE) to update its 2007 study on payment problems and make recommendations to Congress as to how to fix any such problems.

IDF is in full support of the amendment. We are busy mobilizing our constituency to garner support for the amendment among Senate Finance committee members. At the close of business on Monday, IDF sent out a special edition of the IDF e-newsletter urging people to use the IDF Action Alert to contact members of the Senate Finance Committee. Within 24 hours, over 300 IDF Action Alert letters were sent to Finance committee members. As of this writing, within 48 hours, a total of over 700 Action Alert letters have been sent. That is extraordinary and attests to the commitment and activism of the IDF community. Keep those Action Alert letters going to Senate Finance committee members!!! They are having an impact!!

IDF has also been working with other patient and medical organizations to support the Kerry Amendment C-5. Seventeen patient and medical organizations, including the American Academy of Asthma, Allergy & Immunology and the Clinical Immunology Society, have sent a joint letter to Finance committee members in support of the amendment. And, each organization has sent hard copies of letters from their respective Action Alerts. We want legislative members and their staffs to know that the email letters they receive are “real”.

As I write this blog, I’m listening to and occasionally watching, on my computer, C-Span as the Finance committee deliberates the over 500 amendments that have been filed. At this point, no one knows how Senator Kerry’s amendment C-5 will fare in the committee. However, one thing is for certain, IDF’s patients, families and friends have been “stepping up” their support for IVIG access. Stay tuned!

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By admin – September 24, 2009