Another Reminder to contact your representative!!!! STAT!

IDF Needs Your HELP to Fix IVIG Access and Reimbursement
Contact Your Senators and Representative!

After the 4th of July recess, Senate and House Committees will begin to consider the much talked about health care reform legislation, including changes to the Medicare program. And both the House of Representatives and the United States Senate will continue to debate health care reform during the month of July. It is imperative that the language in HR 2002 and S. 701, the Medicare Patient IVIG Access Act be included in any health care reform legislation passed by this Congress. Your voice at this critical time is important for both chambers of Congress to hear!!

The members of the Senate and the House need to know that people care about IVIG and they need to have IVIG access problems addressed in the health care reform bills.

Please act now and ask your families and friends to contact their Senators and Representative by participating in IDF’s Action Alert. You make the difference!

Contact Your Representative

In 2005, Congress changed the way Medicare pays for IVIG and, as a result, many doctors no longer provide the treatment - making it harder for patients to get IVIG.  Also, current law does not pay for the nursing and IV items needed for IVIG therapy administered in the home. These serious problems affect the entire community as an increasing number of private pay insurers are following Medicare’s lead.

To fix this problem, Representatives Israel (NY), Brady (TX) and, Schwartz (PA) introduced HR 2002, the Medicare Patient IVIG Access Act, and Representatives Matsui (CA) and Tanner (TN) introduced HR 1765. Both of these bills are critical to patients who rely on IVIG therapy for their health, as they correct the current problems and respond to government reports that confirmed these problems.

Please contact your Representative’s office and urge them to include HR 2002 and HR 1765 in any health care reform legislation passed by this Congress. Call the US Capitol Switchboard at (202) 224-3121 and request to be transferred to your Representative’s office. Please also CLICK HERE TO SEND THE ACTION ALERT LETTER to your Representative!


Contact Your Senators

In 2005, Congress changed the way Medicare pays for IVIG and, as a result, many doctors no longer provide the treatment - making it harder for patients to get IVIG.  Also, current law does not pay for the nursing and IV items needed for IVIG therapy administered in the home. These serious problems affect the entire community as an increasing number of private pay insurers are following Medicare’s lead.

To fix this problem, Senators Kerry (MA), Alexander (TN), Wyden (OR), Whitehouse (RI) and Brownback (KS) introduced the Medicare Patient IVIG Access Act, S 701.

Please contact both of your Senators, and urge them to include S. 701 in any health care reform legislation passed by this Congress. Call the US Capitol Switchboard at (202) 224-3121 and request to be transferred to your Senator’s office. Please also CLICK HERE TO SEND THE ACTION ALERT LETTER to both of your Senators!

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ACTION ALERT FROM THE IDF ABOUT ACCESS TO IVIG !!!!

TAKE ACTION!

IDF Action Alert - Contact Your Representative!

IDF needs your HELP to Fix IVIG Access and Reimbursement

Take Action!

Contact Your Representative!

Both the House of Representatives and the United States Senate are currently debating and will continue to debate, during the month of July, health care reform legislation.  It is imperative that the language in HR 2002 and S. 701, the Medicare Patient IVIG Access Act be included in any health care reform legislation passed by this Congress.  Your voice at this critical time is important for both chambers of Congress to hear!!

In 2005, Congress changed the way Medicare pays for IVIG and, as a result, many doctors no longer provide the treatment - making it harder for patients to get IVIG.  Also, current law does not pay for the nursing and IV items needed for IVIG therapy administered in the home. These serious problems affect the entire community as an increasing number of private pay insurers are following Medicare’s lead.

To fix this problem, Representatives Israel (NY), Brady (TX) and, Schwartz (PA) introduced HR 2002, the Medicare Patient IVIG Access Act, and Representatives Matsui (CA) and Tanner (TN) introduced by HR 1765. Both of these bills are critical to patients who rely on IVIG therapy for their health, as they correct the current problems and respond to government reports that confirmed these problems.

Please contact your Representative’s office and urge them to include HR 2002 and HR 1765 in any health care reform legislation passed by this Congress.  Call the US Capitol Switchboard at (202) 224-3121 and request to be transferred to your Representative’s office.  Please also send a letter!

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THINKING ZEBRA

Well, I’m all set to go to Orlando for the IDF National Conference.    While the theme is NOT Zebra – there is a recurring mode of Zebra that is part of this conference.

Why Zebra you ask?  It has to do with how our doctors come up with our diagnosis of PIDD.  The IDF is beginning an awareness and fundraising campaign for PIDD.   The are calling it THINK ZEBRA.  The reasoning behind this is when doctors are in medical school, they learn the saying,“when you hear hoof beats, think horses, not zebras.”  Most are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes they need to look for a zebra. PIDD patients are the ZEBRAS of the medical world.

So, on Friday evening, there will be black and white all over- along with, I’m guessing, some pretty crazy ZEBRA attire.

I’ve been busy helping with the marketing and getting everything ready for the BioRx booth and the staff who will be there ready to meet and greet the PIDD patients.   They are anxious to tell the special BioRx story- why this company is so different and caring about our special patient population.

Anyone who stops by Booth #11 will meet the gang.

You will recognize them easily by the big smiles they will be wearing.  There will be raffle baskets as well- and who knows- there just might be some ZEBRA stuff inside them.

If you don’t know what I look like- I’m including a pic of me here.

Please, stop me in my tracks and introduce yourself.

I can’t wait to meet you.

                          DSCN0307

And, for those of you NOT attending- watch here for updates on the meeting, the medical info, and pics of our PIDD PEERS.

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Notes from Emily

Emily was profiled on my blog, under the patient profiles section about 2 years ago.   She has just finished her freshman year of college and is a pre-med major.   She uses Vivaglobin and talks about doing Sub Q here.

Emily is also the daughter of our Director of Consumer Advocacy, Carol Ernst.   They are a remarkable duo.

This Q & A was originally written for CSL Behring clinicians who are teaching patients how to use Vivaglobin.

If you are trying to decide whether or not to switch from IVig to SCig (Sub Q) this interview with Emily might be helpful to you:

You were diagnosed with primary immunodeficiency (PI) as a toddler. What is your earliest memory of your Ig therapy?
My first coherent memory was when I was 3 or 4, sitting behind the recliner, screaming at the nurse that I wasn’t going to get my IV. I assume, at some point, someone pulled me out from behind the chair to infuse my therapy.

What was most upsetting to you about your IVIg?
It was probably a combination of the needles and the headaches.

When you were 10, you started Vivaglobin®. What do you remember about that change in your Ig therapy?
I remember not wanting to do it. My parents entered me into the clinical study. If it was my decision, I wouldn’t have done it. But it was my parent’s decision at the time, and the right one.

Were you afraid of the needle?
I wasn’t afraid of the needle. I was really nervous about getting the injection in my side rather than the IV. It wasn’t normal to me.

At first I got the injections in the stomach in the front where I had very little subcutaneous tissue. Eventually we moved it to the side, where I have a little more sub-q tissue. That was better.

How have your thoughts or feelings about your Vivaglobin® therapy shifted over the years?
I like it a whole lot better now. I’m so glad that my mom managed to meet Dr. Berger and to get me involved in the study. If it weren’t for Vivaglobin®, I don’t know how I would have been able to be so far away from home, at college, living in a dorm.

Why do you like it better?
With IV, I still got sick a lot. I am so much healthier now. With Vivaglobin®, I’ve missed only 1 day of college. In high school I probably missed 3-4 days of school a year. Back when I was on IV, I would miss 25-30 days a year.

When did your feelings toward Vivaglobin® become more positive?
I was reluctant for probably a year or two. I refused to learn to do it myself. Finally, about 2 years later, I really wanted to go to overnight summer camp for 2 weeks. My parents said I could go to camp if I took complete responsibility for infusing my own therapy. I was probably about 13.

When I started doing it myself, that helped a lot. We switched needle sets which also helped. Originally it was this spring-loaded machine that shoots into you. The plastic wing set, I’ve been using for 3-4 years, it just pushes the needle in. The spring thing hurt more than the needle actually going in.

Tell me about learning to self-infuse your Vivaglobin® therapy.
It’s really not that difficult. You put the needle on the syringe. Draw up the medication, and connect the tubing set. You prime it, and then you just inject it.

When I first started, I drew it up first, and then my mom would inject me. Eventually, I would do it, and my mom and dad would be around. They don’t even need to be around now.

What advice would you give to nurses who are teaching patients how to self-administer Vivaglobin®?
It’s definitely not a process you can rush. For me personally, my mom was a nurse and my dad was a doctor. That benefited us a whole lot. If they don’t have that medical background, it can be a completely foreign process to them. It just can’t be rushed.

Have you had any problems with your therapy?
Sometimes I have a little site swelling right afterward. It’s not painful. And it goes away really fast. It’s not really a problem. Sometimes there’s redness from the tape. I can’t really come up with any real issues.

You’re a busy college student, how do you find time to work your therapy into your life?
It’s not like I have to work anything in. It takes about 1 to 1-1/2 hours. I’ll take the medication out of the refrigerator. Go to class. Come back. Just draw it up. Put it in, and do homework with it in. Sometimes I go to the cafeteria with it in.

I haven’t gone to class with it in. I just choose not to, because I’d have to carry my sharps container. Also, I get uncomfortable and a little stiff to sit with the needle in for a long time. The medicine absorbs better if I move around. If I’m just sitting, it absorbs more slowly. It gets a little stiff, and it’s sensitive to the touch.

How do you keep track of which days you’re supposed to infuse?
I write it down on my school assignment calendar. It’s really a bad idea to postpone it.

I just make sure I have time. If it’s on a Saturday, I just make sure I do it before my friends go out. I plan ahead.

Half my friends have been around when I do it. I don’t really care. I’m like, whatever.

What tips would you offer other patients about staying adherent with their therapy regimen?
Use a calendar or a log to keep a record. Don’t let it stop your life. Some people worry that it will take up time. Maybe it’s because I’m younger and more open-minded, but I’m going to do what I want. I’m not going for a jog with it in. But I do stuff. I hang out, go to meetings, walk to campus, go down to a friend’s dorm room.

What else do you think would be important for Vivaglobin® nurses to know?
Patients are definitely going to be nervous — no matter how old they are. You probably need to convince them to do a few infusions. If they stick with it, they’ll probably find they’re healthier with Vivaglobin®. You can run to the store or go to eat. With IV, you ARE stuck. You’re attached to this enormous pump and stuck in the room.

I think nurses should convince patients to stay with it long enough to see how it benefits them.

If the nurses reading this article could only remember one thing we talked about, what would you think is most important for them to know?
Probably the fact that Vivaglobin® is a better choice in the long run. And that patients should stick with it, because it’s less intrusive in their lives.

Emily’s Advice includes:

  • Patients are definitely going to be nervous — no matter how old they are.
  • Learning self-administration techniques is not a process you can rush.
  • Encourage patients to stick with their therapy long enough so they can see its benefits.
  • Use a record or log to plan ahead and keep track of when therapy is due.
  • Sitting still in the same position during an infusion can cause stiffness or tenderness at the infusion site.
  • For improved comfort, infuse into a site where patients have more subcutaneous tissue.

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Blue Jeans for Healthy Genes in Rhode Island

On May 3rd, Susan, Michelle, Betty and Maggie, all volunteers/patients with the IDF, put together an incredible fund-raiser.   It was a 5K Run/Walk which was held in Buttonwoods City Park in Warwick, Rhode Island.   They walked and ran through a beautiful woods and along the beach.  Great scenery, and a great day to be out.

This fun event was the first annual run/walk for this chapter of the IDF.   They were able to donate $1,000 to the IDF.  It was not, however, their first fund-raiser.

BioRx was a sponsor for this event.

                                RIRUN

                                GREAT JOB RHODE ISLAND!!

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IDF WINE TASTING EVENT AND SILENT AUCTION

On May 15th, just outside of Boston, some very active and energetic volunteers with the IDF put on a very successful Wine Tasting and Silent and Live Auction.   They had terrific music as well from Joe’s Attic.  They had the very popular ZEBRA theme for PIDD patients. 

The event was a huge success, and they were able to raise over $11,000 in total.    The Project: Cure was launched successfully and the generous contributions helped bring ‘One More Day’ to many families.   Stef, a volunteer was exuberant and claimed “  It was a great night for PIDD families and for the IDF”!

I might add that BioRx was one of the sponsors for this event.

BioRx also donated several items MADE by PIDD patients as well.

                                 Michelle, Stef and Zebra Cake

                                 Michelle, Stephanie and Zebra Cake

                                Zebracake

                                 Zebra Cake made by Michelle

                                 Zebrafolks

                                  Folks dressed in Zebra Garb

                                  Karen, Claire and Al

                                       Karen, Claire and Al

                                MaryandKathy

                                         Mary and Kathy

                   

                               A great time was had by all.

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Do you ever get really tired of having PIDD? If so, read what a guest writer had to say about her experience of living with PIDD!

We all get fed up with having a chronic disease.   It wears us out, and it grows old after a while.

How many times can we tell our family and friends and co-workers NO?

This is a very humorous take on this topic written by a PIDD patient and friend of mine, Shawne.

I hope you enjoy it as much as I did.

                                     I want a divorce!

Listen, this immune deficiency thing was fun for a while. I mean I’d been looking for so long, years and years. I had spent hours searching the Internet, reading profiles, talking to important smart people who seemed like they might be able help me find it. I even flew all the way to Rochester, Minnesota just because I thought maybe I’d meet it there. But even in Rochester, Minnesota, I didn’t find my immune deficiency.

I’d nearly given up hope of ever finding anything that was right for me, when that nice doctor in Boston finally introduced me to my immune deficiency. I was so happy. I mean some people look their whole lives and die before they every find something like my immune deficiency. I knew how lucky I was.

So for a while, it was great. Like I could finally relax now that I’d found it. It went to bed with me every night and it was always still there when I woke up in the morning. It even came to work with me. And if I didn’t feel up to doing anything much, it was perfectly content to hang out on the couch and watch bad movies with me.  With my immune deficiency, I finally felt heard after all those years of trying to get someone to listen. Especially doctors. I’d been trying so hard for so long to figure out a way to get doctors to listen to me and it turned out the immune deficiency was pretty good at helping me with that. It spoke up for me, when I couldn’t. Also, it introduced me to a lot of its other good friends, which I’m grateful for.

But here’s the thing…it’s starting to smother me. I mean all this closeness; don’t you think it’s just a little too much? I’m sick of the way it leaves my sheets all wet with sweat at night, and it leaves little balls of kleenex everywhere. It doesn’t seem to care if the house is a disaster and if the laundry hasn’t been done in weeks. In fact, I think it prefers things that way. It reliably attacks me every three months, dragging me to one of those doctors it seems to be so fond of. I’m beginning to find that experience to be a little boring. At night sometimes, it stays so close I can’t even breathe. Literally, I have to take a shower right away in the morning just to get it off my chest and get a little breathing room. Half the time, it follows me into the bathroom. Speaking of bathrooms, it even wants to control what I eat and, if I do eat something it thinks I shouldn’t, it goes out of its way to make me pay for it.

It distracts me at work. And it’s clear it doesn’t want me spending time with anyone else, because just about every time I make a plan, my immune deficiency finds a way to try to force me to stay home. I always go anyway; I refuse to give in to my immune deficiency! But then my immune deficiency insists on going with me and doing everything it can to mess up my good time anyway. I really fear it’s trying to convince me I should just stay home with it and watch bad movies all day. But see, that life may be fine for the immune deficiency, but it isn’t fine for me. I mean this business of controlling what I eat, keeping me from having fun with anyone else, attacking my body and forcing me to stick needles in myself - doesn’t that sound a little like a domestic violence situation?

So, I’ve decided to file for a divorce from my immune deficiency. I know it’ll be hard. It may try to attack me and it may do everything in its power to stop me from leaving it. I’m going to need a really really good lawyer. You see, I just don’t want to be married to it anymore. Maybe I’ll call that nice doctor in Boston who originally introduced me to my immune deficiency. Maybe he knows a good lawyer who can help me with my divorce.

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Important info about our life saving treatment and the pandemic from PPTA

Reference No.:PPTF07005 from PPTA

Statement on Safety of Plasma Protein Therapies and the H5N1 Viruses
PPTA members are committed to providing safe and effective therapies and PPTA understands that patients who rely on plasma protein therapies may have concerns about the possible transmission of highly virulent strains of influenza H5N1 viruses
through these therapies. Therefore, PPTA members continue to work to ensure that these viruses or any other emerging disease, do not compromise the safety of plasma
protein therapies.

Influenza H5N1 viruses are lipid enveloped viruses.1 PPTA members have spent years studying the effects of the manufacturing process on lipid enveloped viruses. All data
demonstrate that the manufacturing processes, which contain commonly used inactivation methods such as pasteurization, vapor heating, low pH, and solvent detergent treatment methods, readily inactivate these types of viruses. Recently, a
study led by Dr. Thomas R. Kreil confirmed that the H5N1 virus is effectively inactivated through these commonly used methods.2 These findings demonstrate the high level of
safety found in today’s plasma protein therapies. PPTA will continue to monitor the spread of H5N1 viruses and remain vigilant in efforts to ensure the safety of these lifesaving
therapies.

Here is the Pandemic link from the PPTA so that you can check your current geographical area, learn more about how it applies to us, and see additional pertinent information.

http://www.pptapandemicinfo.org/component/option,com_frontpage/Itemid,1/

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What we need to know about Swine flu

This is from Harvard Medical regarding Swine flu.

I hope it answers some of your concerns regarding this current scare.

Your swine flu questions answered

An epidemic of swine flu has recently developed in Mexico and the United States, says the CDC. Swine flu has killed many people in Mexico, and the outbreak has features that suggest it could become a global pandemic. A pandemic is an epidemic that spreads around the whole world. Pandemics also often cause more severe disease than epidemics.

As of Sunday, April 26, the United States has declared a public health emergency, and suspect or confirmed cases are being reported from many parts of the world. If a pandemic happens, it could be very serious for human health and the global economy (which definitely does not need any more bad news right now).

Q: What are “swine flu” and “bird flu”?

A: Flu is a disease caused by the influenza virus. Humans, pigs, birds, and other animals all can be infected by influenza viruses. Typically, influenza viruses can infect only one species, so the influenza viruses of humans are different from those of pigs and birds. However, sometimes a virus can infect more than one species. For example, pigs sometimes can be infected not only with pig influenza viruses, but also with human and bird influenza viruses. Then these viruses can sidle up to one another and swap genes, creating new viruses that have a mix of genes-from human, pig, and bird viruses. That is what has happened with this new swine flu virus.

Sometimes this swapping of genes allows a virus that was originally able to infect only pigs or only birds to also infect humans. When that happens, we refer to the illness as “swine flu” or “bird flu.” This current virus could actually be called “swine/bird flu,” since it has some genes from pig flu viruses and other genes from bird flu viruses. However, for simplicity’s sake, it is just being referred to as “swine flu.”

Q: Are swine flu or bird flu viruses dangerous?

A: Most viruses that cause swine flu or bird flu are very hard to pass from one human to another: they don’t cause epidemics. Sometimes, however, further changes in genes create a virus that can spread rapidly among humans, and can produce a more severe illness. One reason this illness is more severe is that the virus is so new. The regular flu that comes each year is caused by a regular human influenza virus that often has similarities to the viruses that have caused the flu in years past, so people have some degree of immunity to the latest virus. The unusual swine flu or bird flu viruses that develop the ability for person-to-person spread are so different that people have little or no immunity to them. That is what some experts worry may be happening with swine flu.

Q: How bad can a global pandemic be?

A: The worst global pandemic in modern times was the influenza pandemic of 1918 to 1919. It affected about a third of the human race, and killed at least 40 million people in less than a year-more than have been killed by AIDS in three decades. The world economy went into a deep recession. The average length of life dropped for 10 years. In other words, global pandemics can be a really big deal. On the other hand, other pandemics have been considerably less serious than the 1918 to 1919 influenza pandemic.

Q: Can this new swine flu virus be easily transmitted from person to person?

A: Unfortunately, the new swine flu virus can be transmitted between humans. It is not clear yet how easily it is transmitted, nor how it is transmitted. Almost surely it is transmitted by sneezing and coughing, and by skin-to-skin contact (like shaking hands or kissing) with an infected person.

Q: How sick do people get from this virus?

A: Most people infected with the virus have recovered from the illness. In fact, all of the people in the U.S. have recovered.

However, in Mexico, some people have kept getting sicker, and eventually died. The regular flu viruses that come each winter can occasionally cause severe illness and death. Most often, this happens in very young children or frail elderly people. What worries some experts is that many of the deaths in Mexico have been in young, healthy adults. In past pandemics, like the influenza pandemic of 1918 to 1919, it was also young, healthy people who were most likely to die. Experts are puzzled as to why the infection currently appears to be worse in Mexico than in the U.S.

Q: Are there treatments?

A: As of now, the new virus is killed by two antiviral medicines-oseltamivir and zanamivir. Based on experience with other flu viruses, treatment would be most effective if given within 2 days of the onset of symptoms. As long as this current swine flu virus is infecting people, it is likely that health authorities will recommend that people with more severe illness take these medicines.

On the other hand, there is no proven benefit from using the medicines before symptoms develop, and there is proven harm: unnecessary widespread use of these drugs could produce drug-resistant viruses.

There is no vaccine yet for the new virus, and the Centers for Disease Control and Prevention (CDC) has expressed doubt that this year’s regular flu vaccine will offer protection.

Q: How do I know if I’ve caught swine flu?

A: The initial symptoms of this flu virus are like those of the regular, annual flu viruses: fever, muscle aches, runny nose, and sore throat. Nausea, vomiting, and diarrhea may be more common with this swine flu than with the regular flu. If this epidemic hits your community and you develop flu-like symptoms, it is likely your doctor will take samples from your throat or material you cough up and send them to the state public health laboratory for testing.

Q: How do I protect myself?

A: To protect yourself from catching swine flu, take the same steps you would to prevent getting any cold or flu:

  • Wash your hands or use alcohol-based hand cleaners frequently.
  • When you greet people, don’t shake hands or exchange kisses.
  • Avoid contact with people with flu symptoms.
  • And to protect others, if you develop sneezing and coughing, be sure to use tissues to wipe your nose and cover your mouth, and to throw the tissues in the trash or toilet bowl.

Q: How long are people contagious?

A: Adults should be considered contagious until at least 7 days after the start of symptoms; with children, it may be 10 to 14 days.

Q: Can you get swine flu from eating pork?

A: Absolutely not. But, as you probably know, you need to cook pork thoroughly to avoid getting other illnesses that can be spread by undercooked meat.

Q: Will there be unusual restrictions on our lives if there is a global pandemic?

A: If there is a global pandemic, for some period of time governments may well restrict travel (indeed, some governments already have). Governments also may close schools and public places, require as many people as possible to work from home, tell any people who develop symptoms to isolate themselves at home, and tell people to seek medical attention immediately if more serious symptoms develop.

What are those symptoms?

For adults, teens, and kids aged 3 to 12, the most worrisome symptoms are:

  • Shortness of breath
  • Persistent vomiting
  • Confusion
  • Dizziness

For children younger than 2, the most worrisome symptoms are:

  • Very rapid breathing
  • Not interacting normally, not eating or drinking normally, being unusually irritable, or appearing unusually sleepy
  • High fever and rash
  • A bluish color of the lips and skin

Q: Where can I get more information?

A: For updated information from the CDC, go to: http://www.cdc.gov/swineflu or visit Harvard Health Publications’ Flu Resource Center.

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PLEASE TAKE ACTION ASAP

This is another reminder from the IDF to take action on this bill ASAP.   Please take a couple of minutes and do this to ensure that we, as PIDD patients, have access to our much needed IgG therapy.

Action Alert! - We Need Your Help!
New Senate Legislation to fix Access and Reimbursement

Many members of primary immunodeficiency community experience delays in and denial of treatment due to insufficient Medicare reimbursement. A report from the Office of the Inspector General showed Medicare reimbursement for IVIG is lower than the cost many providers pay for the product. As a result, a number of physicians and hospitals cannot afford to administer IVIG treatment to Medicare patients. This serious problem affects the entire community as an increasing number of private pay insurers are following Medicare’s lead to determine reimbursement rates for IVIG.

To fix this problem, legislation was introduced March 25, 2009 into the United States Senate. Senators John Kerry (MA), Lamar Alexander (TN), Sheldon Whitehouse (RI), Ron Wyden (OR) and Sam Brownback (KS), introduced the Senate Bill S. 701, The Medicare Patient IVIG Access Act. An identical House bill is expected to be introduced by the end of April 2009. This legislation, offers a solution to the current IVIG access crisis by establishing appropriate reimbursement in all sites of care for our patients. It also changes current policy regarding Medicare coverage of home infusion to include the cost of items and services related to the administration of IVIG in the home for primary immunodeficient patients.

IDF is working in coalition with other patient organizations and physician organizations including the American Academy of Allergy Asthma and Immunology (AAAAI) and the Clinical Immunology Society (CIS). With the strong leadership of the policymakers who have signed onto support this legislation, IDF hopes to improve access to treatment and the quality of life of the countless patients who struggle with negative health outcomes, increased intervals of care, change in site of infusion, difficulty finding providers, and denial of treatment.

Click here to view the Medicare Patient IVIG Access Act page

What you can do to help

Go to the IDF Action Alert and contact your Senators to ask them to sign on as cosponsors to S. 701, The Medicare IVIG Patient Access Act. With your help, we can move forward to restore proper access to this life- saving treatment for patients with PIDD. Your legislators need to know why IVIG therapy is so important, so please utilize the text box to add the story of how IVIG treatment impacts your life, focusing on any access problems.

Be the voice of the PIDD patient community!

Meet with your legislators at home

April 6-17 marks the Spring District Work Period. During this time, your Senators and Representatives will be working at home in their district offices. This presents the ideal opportunity to speak with your legislators about the importance of this legislation. As a constituent, it is important that you share your concerns with them. IDF encourages you to visit your legislators during the district work period and ask your Senators to sign on to cosponsor S. 701, The Medicare Patient IVIG Access Act. Ask your Representative to be an original cosponsor of the House companion bill, which will soon be introduced.

To locate contact information for the local offices for your Senators and Representative, simply visit www.senate.gov and www.house.gov.

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