I live in Minnesota, and see many physicians from the University of Minnesota.  I really like them too.  In fact, I want my primary right next to me when I kick off.   It has taken me most of my life to find the perfect primary- and now that I finally have- I almost lost him.

I’ve had insurance with Blue Cross for years, and I have to admit, I’ve NEVER had any problems with them.  None of the nightmares I hear about from other patients and their insurance companies.   However, the contract between BCBS and the U of MN physicians had not been signed as of 2 weeks ago- and the end date was Friday, August 23, 08.  About 2 weeks ago, I began to get a bit nervous about this- as I had no desire to spend weeks, months, years trying to replace the wonderful care I receive from my doctors.   I called the Governor of MN’s office, the Attorney General, several lobbyist, and the Star Tribune newspaper to help me get this contract DONE.

Well, last minute, down to the wire negotiations ended up getting settled - as many contact negotiations go.

The newspaper did interview me for this- and I ended up on the front page of the Friday Business section.

This is how it went:

Fairview, Blue Cross sign new contract

By CHEN MAY YEEChen May Yee, 612-673-7434

August 21, 2008

A day before their contract was due to expire, Blue Cross and Blue Shield of Minnesota and Fairview Health Services pulled back from the brink and signed an agreement that runs through 2009.

The new contract ends a month of uncertainty for tens of thousands of Blue Cross members who had been told they might soon have to find doctors outside of Fairview or pay higher out-of-network charges.

The old contract ends today for Fairview clinics and on Oct. 28 for Fairview hospitals.

“We had many good and useful discussions that helped us develop a mutually acceptable contract,” said Mark Eustis, Fairview president and chief executive.

As is usually the case, contract negotiations had stumbled over prices. Blue Cross said Fairview was asking for rates that were higher than those of other providers. Fairview said it sought the same prices being paid by other major insurers.

Both sides claimed partial victory Thursday.

Eustis said the new contract would allow Fairview to “make appropriate investments so we can continue to provide exceptional patient care and service.”

Colleen Reitan, Blue Cross president and chief operating officer, said the insurer had “made progress in keeping health care more affordable.”

Blue Cross is the state’s biggest health insurer, with 2.9 million members. Fairview is the third-largest clinic and hospital group and owns the University of Minnesota Medical Center, Fairview.

Blue Cross estimated that 30,000 to 50,000 of its members went to a Fairview Clinic in the last 12 months.

For most healthy people, the task of finding a new doctor in a state full of good ones is a minor inconvenience. But for those with chronic or rare conditions, finding a new doctor they like can be a full-scale endeavor.

Carol Miletti of Mound has primary immune deficiency disorder, commonly known as “boy in the bubble” disease. She sees a primary care doctor at University of Minnesota Medical Center, Fairview at the university’s main campus.

Miletti, 59, infuses herself daily with plasma that provides antibodies to help fight common infections. Her doctor coordinates her care with more than 10 specialists, including an endocrinologist, a rheumatologist, a gastroenterologist, a hematologist, a pulmonologist and an ophthalmologist.

When Miletti heard Fairview might no longer be part of the Blue Cross network, she moved up tests she had scheduled for October to mid-August, including a mammogram, a gynecological exam and a bone density scan. As contract talks dragged on, Blue Cross assigned her a case manager and gave her a three-month extension on care at Fairview.

Told Thursday there was a new contract, Miletti said she was so happy she “had chills.”

“I’m immensely relieved that I don’t have to turn my life upside down to re-establish care elsewhere,” she said.

© 2008 Star Tribune. All rights reserved.

I love going to IDF meetings around the U.S.   There are so many wonderful patients to meet, some for the first time, and some are already old friends.

Everyone has a different challenge, and everyone has gone through the ‘I was just diagnosed phase.’  We all know what that feels like- and it’s great to be able to help a newly diagnosed patient wade through the fear and trauma by holding their hand as they make their way.

The IDF held a patient meeting in Chicago in May.  I attended it with Aaron, the rep from BioRx  for that region.   We heard several great physicians speak- namely Dr Ramsay Fuleihan from Children’s Memorial in Chicago and during the Question and Answer session, Dr. Javeen Akhter participated as well.    The surprise guest was Dr. Wendell Richmond who came to listen, but contributed to the Q & A with answers that were right on the mark.

The doctors spent quite a bit of time discussing the relationship between having an immune system that is out of balance, and, especially in the case of  CVID, autoimmunity.   Thus, CVID and autoimmune disorders seem to go hand in hand.   Let’s see- last count- I have 4.

They also reiterated the fact that PIDD patients, especially with T-Cell deficiencies, should NOT have a live vaccine.   Make sure you remember that when they tell you to get a shingles vaccine, or any other LIVE vaccine!!

Some of my favorites from the IDF Conference in St. Louis last summer were in attendance too.   Kristin, a new fan of Vivaglobin, and her Mom and Dad were at this meeting.

Kristin and I are in the front row (we both love our Vivaglobin) and her parents, Sue and Rich are in the back, as well as the Vivaglobin rep, Kim Clarke.

I guess Dr Wendell Richmond was making both me and Kim Clarke laugh.

What in the world is this you ask??  One of the patients, Faye, is gluten intolerant, and ordered a delicious gluten free meal- but, alas, this VERY STALE COOKIE sat alone and dejected.

It sure seemed funny at the time.

Hope to see all of you again soon.

Contact Your Senator and Urge Them to Cosponsor S. 2990

Take Action!

UPDATE: NEW LEGISLATION BRINGS NEW HOPE

Senators John Kerry (D-Mass.), Lamar Alexander (R-Tenn.) and Debbie Stabenow (D-Mich.) introduced S. 2990, “The Medicare IVIG Access Act”, into the U.S. Senate on May 7, 2008. S. 2990 is a Senate companion bill to H.R. 2914, which was introduced into the House of Representatives in June 2007.

Similar to the House bill, S. 2990 intends to improve reimbursement for IVIG for Medicare beneficiaries. It will also provide coverage under the Part B home infusion benefit for related items and services in hopes that all patients with PIDD can live more healthy and productive lives.

The bill will be referred to the Senate Finance Committee, which has jurisdiction over Medicare legislation. Senators Kerry and Stabenow, senior members of the Finance Committee, and Senator Alexander, a senior member of the HELP Committee (U.S. Senate Committee on Health, Education, Labor and Pensions), will advocate for inclusion of the bill in the Senate’s expected Medicare legislation this year.

It is critical that you urge both your Senators and Representative to support “The Medicare IVIG Access Act” and the need for an immediate fix to the current IVIG access and reimbursement issue.

Please encourage all of your family, friends and loved ones to help the patients of the PIDD community by getting on Action Alert and urging Congress to act now!

Please go to www.primaryimmune.org and click on the TAKE ACTION LINK TODAY!!

One day this past week, I was invited to join some PIDD patients, parents of PIDD patients, IDF and CSL Behring staffers to help promote a bill that would allow access for all to plasma products, in home settings, or in clinical settings. As we all know, many of us have been denied, or threatened to be denied access to this life-saving therapy. The actual bill will go before the legislators next January- but we are attempting to get the right people educated about it NOW. The goal is to get this bill passed in MN, and then use it as a template for the remaining 49 states.

We divided up in 3 smaller groups, and off we went to meet with the legislators that we personally voted (or not) for in the last election cycle. I can tell you that after asking me several questions about the authors, the bill number, explanation of PIDD and why we need plasma therapy, my state Representative told me he was on the same page. That was good news. TINY BABY STEPS.

I then spoke with my Senator, and she asked questions for about 15 minutes. Her questions were very focused on $$$$. How much does it cost, how often is it given, how long are you on this therapy, and what will the insurance companies response be to this bill. VERY GOOD POINT. Of course, they will NOT like it at all- and will most likely push hard to keep it from getting passed.

Similar conversations were going on with all of the patients and legislators throughout the day. I HOPE WE GOT THEIR ATTENTION!

I have been collecting stories about those who have been denied treatment, or have had a great deal of resistance from their insurance companies as they attempt to get treatment.

If you are willing to share you story to help us make this point, please comment here, or send me your story off-line with permission to use. Please include your state and your insurance provider in your comments.

Every single story will help us- and as we get more involved- we will need all of you to step up to the plate to help get this bill passed around the US.

Someone commented on the IDF Forum, “why don’t we have more awareness”? MS patients are about the same in numbers- but most certainly not in awareness.

Everyone has heard of MS- there are very few who have heard of PIDD.

It’s up to us as we have the time or energy to create media and public awareness by sharing our stories, educating others about our disease, helping with fundraisers, etc.

We know what we need to do- we just need the energy to do it.

We can’t afford not to do it.

Like many others around the world, I’ve been hit hard by this year’s virus or flu bug.

It’s been noted by many authorities that the vaccine this year was not on the mark.

There are two main types of influenza A, H1N1 and H3N2, and influenza B.

Unfortunately, after the vaccine began to be developed, a new strain of H3N2 virus was identified in Brisbane, Australia.   But, it was too late to include this strain, and as of the first week of February, 08, nearly 34% of those tested, had this Brisbane strain.   UH OH - here comes another to knock on our door, a strain of influenza B called “Yamagata,” which is significantly different from the “Victoria” B strain in the vaccine, was also on the move.  So far 16 percent of all flu samples this winter are influenza B, and of them 93 percent are Yamagata.

These 2 strains account for 44% of all flu samples this year to date, and NEITHER are in the vaccine.   At this moment, the experts are meeting to decide what strains go into NEXT year’s vaccine- hope they do a better job of deciding.

But, that presupposes the notion that a flu vaccine WORKS for a PIDD patient.  Most doctors tell us it does not, but let’s hedge our bets and get one anyway.   I do.  It did not work for me.

How about for you?

According to the Center for Disease Control for the week ending March 8th, 2008,  8.7% of all deaths reported through the 122 Cities Mortality Reporting System were reported as due to Pneumonia and Influenza.   This percentage is above the epidemic threshold of 7.2% for week 10. Including week 10, P&I mortality has been above epidemic threshold for nine consecutive weeks”.

Well, that doesn’t sound too promising does it?

Did you know why the flu is more prevalent in the winter?   Because it shrouds itself in little M &  M like ‘coats’ that instead of melting in your mouth, melt in your upper respiratory tract.  Only in this liquid form can it penetrate our cells.

When it’s warmer out- NO COAT!  So, it doesn’t spread as well.

Regardless of all of this ‘Cliff Claven’ knowledge about the bug- many of us have been down with it this winter.  I’ve heard tales from all over the US about this.  What’s really nasty about this year is that it doesn’t end when it’s over. 

So, I learned the hard way.  The first week of January, I picked the bug up from my loving DH.  I was miserable with it for 3 weeks.  I thought it was over.   I left for a biz trip, and part 2 of the virus from hell drama hit me.  And, it hit hard.  While sleeping, a loud rattling noise woke me and it turned out to be my lungs.   I called my Dr and he sent an antibiotic RX for bronchitis.  I flew the next 2 days in a row, and that night, my left lung collapsed.  SNAP, CRACKLE, POP and a VERY LOUD GUSH OF WIND woke me from my sleep.   I was in the middle of nowhere, alone and far from my cell phone.   I sat up in bed and very gingerly and very slowly began to do breathing exercises that would re-inflate my lung.   DONE!   Now it’s over.

WRONG.  A trip to the ER and I learned I also had pleurisy, anemia and possibly a clot.

They ruled that out.   When I finally was allowed to fly home, my own Dr did a CT SCAN and found a raging case of pneumonia.

What scares PIDD patients the most?   PNEUMONIA!  Especially for those of us who make no antibodies to it.

Thus, I’ve been on flannel pj duty for WAAAY too long - some days I think I’m getting better- but then WHAM, I’m back down again.   All of this illness triggered some pretty serious autoimmune conditions as well.   When it rains it pours.

BUT, TODAY IS THE FIRST DAY OF SPRING, and HOPE SPRINGS ETERNAL.

TOMORROW AND TOMORROW AND TOMORROW.

There has been quite a bit of talk of late on the PIDD web-sites, on-TV, on the radio- all forms of media regarding the reform of healthcare.   While this is an important topic for the nation, it is of great interest for those of us dealing with lifelong chronic diseases.

Many of us have caps on our insurance, many are on disability or considering it - there is medicare, co-pays, out of pockets, insurance denials- the list of health care woes is endless.

Yesterday, I heard one of the most intelligent and non-partisan interviews about what potential changes in health care might come about depending on who gets elected.

While I’m certainly not going to get into any political discussions here, I am going to highly recommend that you go to this link on NPR and either stream or download this interview with a professor from North Carolina who studies and evaluates Health Care Reform.

The program was on Fresh Air with Terry Gross from NPR.org and the link is:

http://www.npr.org/templates/story/story.php?storyId=18910326

Please listen and come back and comment on this story.

Carol

FDA Analysis Showed Patients Receiving Antiepileptic Drugs Had Approximately Twice The Risk of Suicidal Behavior Or Ideation

ROCKVILLE, MD — January 31, 2008 — FDA informed healthcare professionals that the Agency has analyzed reports of suicidality (suicidal behavior or ideation) from placebo-controlled clinical studies of eleven drugs used to treat epilepsy as well as psychiatric disorders, and other conditions. In the FDA’s analysis, patients receiving antiepileptic drugs had approximately twice the risk of suicidal behavior or ideation (0.43%) compared to patients receiving placebo (0.22%). The increased risk of suicidal behavior and suicidal ideation was observed as early as one week after starting the antiepileptic drug and continued through 24 weeks. The results were generally consistent among the eleven drugs. The relative risk for suicidality was higher in patients with epilepsy compared to patients who were given one of the drugs in the class for psychiatric or other conditions.Healthcare professionals should closely monitor all patients currently taking or starting any antiepileptic drug for notable changes in behavior that could indicate the emergence or worsening of suicidal thoughts or behavior or depression.The drugs included in the analyses include (some of these drugs are also available in generic form):

Carbamazepine (marketed as Carbatrol, Equetro, Tegretol, Tegretol XR)
Felbamate (marketed as Felbatol)
Gabapentin (marketed as Neurontin)
Lamotrigine (marketed as Lamictal)
Levetiracetam (marketed as Keppra)
Oxcarbazepine (marketed as Trileptal)
Pregabalin (marketed as Lyrica)
Tiagabine (marketed as Gabitril)
Topiramate (marketed as Topamax)
Valproate (marketed as Depakote, Depakote ER, Depakene, Depacon)
Zonisamide (marketed as Zonegran)

Although the 11 drugs listed above were the ones included in the analysis, FDA expects that the increased risk of suicidality is shared by all antiepileptic drugs and anticipates that the class labeling changes will be applied broadly.

Read the complete 2008 MedWatch Safety Summary including a link to the Healthcare Professional Sheet regarding this issue at:

http://www.fda.gov/medwatch/safety/2008/safety08.htm#Antiepileptic

SOURCE: US Food and Drug Administration

I had the pleasure of dining with 3 CVID patients in Savannah last week. We talked up a storm. It is always enlightening to meet patients and share stories. Gini Lea, Mandy and Jen made me feel like I talk in slow speed being from the north. We had lots of fun and lots of laughs.

Gini Lea is an honors biology teacher. She has remarkable strength and intelligence. She has fought many health battles, including loss of hair, only to keep bouncing back like the everready bunny. Whenever she was younger, she was on treatment, then stopped, then started again. She finally entered a clinical trial for Vivaglobin, and has been doing Sub Q ever since.

Mandy is the mother of 2 boys, 9 months and 5 years old. Mandy has been sick since she was around 6 years old. She was in and out of hospitals about once a month as a child. She started IV’s when she was 8 yrs old. She is very excited that she finally started Sub Q about 5 weeks ago and claims “I love it, I would never go back”. She happily admits that she no longer has that last week before the IV when she always got sick. Now that she is doing Sub Q with Vivaglobin, she “just wants to get up and GO”!

Jennifer has a 7 yr old daughter. Jen was diagnosed at 3 yrs of age. She started with IM shots, and began IV when she was 7. She has battled pneumonia so many times, that she had to have a lobectomy a few years ago from multiple bacterial infections. She currently does monthly IVig, but is considering switching to Sub Q.

The lovely ladies from Savannah are pictured from left to right:

Jen, Mandy, Gini Lea and the gremlin peeking from behind is me.

I keep running into patients and physicians who are not registered with the IDF.  I’m always very surprised whenever I learn about it.

Why?? If you are not registered how do they know you are out there?

If they do not know you are there- how can they help you?

By registering with the IDF you  are able to add your name as a PIDD patient, which helps with education, advocacy, research and lobbying in DC for better health care.

You will also learn about local chapter meetings coming up in your area.

Please, as a New Year resolution, make the time to get registered.

Here is the link to contact them:

http://primaryimmune.org/contact.asp  or

800-296-4433

My 3rd bout of SIBO in 6 months - does it ever end?

I finished my antibiotics 12 days ago and my tummy was wonderful and once again, I thought I had left it all behind me.   WRONG!

I woke up this morning and it felt like someone had socked me as hard as they could right smack in the middle of my tummy, plus nausea like morning sickness.   I knew it was back -so I took off for my GI  Dr AGAIN.  This time he is trying a different drug since the last drug made me almost as sick as the SIBO did.

I’m leaving on vacation for the holidays, and this was not what I had in mind when I planned on enjoying myself. 

Once again, plans are made, plans are changed, plans get messed up.

As my husband always says, whenever we make plans, we make 3 sets.

1)  Everything goes as planned

2)  Everything goes as planned WITHOUT me.

3)  Everything goes as planned WITHOUT either of us because

he feels the need to stick close by.

Life with PIDD is always a one day at a time adventure. 

Guess this means, if you find yourself with similar problems, feel free to ask me about them- I’ve already been there- done that.

Hope your holidays are wonderful, healthy and happy.

I will enjoy mine, and make the best of this.

At least I won’t have to worry about gaining any weight- that’s really looking on the bright side.