Immune Globulin (IVIG) Challenge

Art by Kathy Ostman-Magnusen

News from Florida Support Group and LtCol Eugene B. Richardson:

ANOTHER IMMUNE GLOBULIN (IVIG) CHALLENGE:

On Wednesday, April 22nd, I will fly to Washington DC with the help of The Neuropathy Association to testify before a Congressional Committee and to present our story before national news media.

In March 2005 I was left without IVIg for 14 days past my scheduled infusion. I ended up with life threatening issues (could not breath and symptoms from the dark side returned) in the emergency room of Imperial Point Medical Center where they came to the rescue and provided the required treatment.

Like so many other patients who live a life of uncertainty, we live never knowing when the product would or not be available in Florida.

Then on March 11th 2009 I was told by the Florida Hospital Cancer Institute in Sebring, Florida where I get my IVIg, that they would no longer provide the product and then at that visit I learned that I had been switched to a powder product without permission from my Neurologist or letting me know. The result was significant medical issues and problems for the next 21 days. Now all I have to do is travel three and a half hours every 21 days to get my infusion!
According to a past issue of The Neuropathy News, IVIg is reimbursed according to the formula called ‘ASP’ or Average Sales Price. For hospitals the ASP formula was reduced from ASP +6% to ASP +5% beginning January 1, 2008 and was further reduced to ASP +3% on January 1, 2009.
At the same time Medicare reduces the reimbursement rate, the manufacturers implemented their yearly price increase adjustment. Then just to be helpful, Medicare which implemented a hospital pre-administration fee back I think in 2006 to help resolve the problem, reduced this fee from $75 per infusion to $37 per infusion in 2009. Now you do not have to be a brain surgeon in finance to figure out the impact on hospitals and patients who suffer the consequences as they are caught in the middle.

From IG LIVING APRIL-MAY 2009 ISSUE

Are you on immune globulin for an autoimmune neuropathy? Have you gone to http://www.IGLiving.com and signed up for your free subscription to IG Living Magazine? Why not, it is free and full of great information for patients using immune globulin!

Dr Scott Carlson, MD Neurologist at the Rockwood Clinic in Spokane, Washington was asked in the current issue of IG Living about the risk of systemic thrombosis when using an infusion port for IVIg administration for autoimmune neuropathies. Here is his answer:

Dr. Carlson: “The risk of systemic thrombosis should not be any different using an infusion port versus usual intravenous (IV) infusion. The risk of thrombosis in general is very low but still an important side effect to know about. A review article by Brannagan et al in Neurology (1996: 47:674-677) suggested that only one patient in 88 receiving IVIg over time had a venous thrombosis, and that patient was bedridden. The recently published ICE trial for CIDP did not contain any thrombotic cases in 117 patients randomized in the trial. The risk of stroke is very low, but published incidence is hard to find. There might be a small risk that the infusion port itself could clot, and good port flushing and management are important.”

Scared of needles? IG Living current issue has a great article on this problem and some great suggestions for overcoming it on pages 11 to 15. Also this article has a great section on dealing with children who are unable to comprehend the issues and some trade secrets on helping children deal with the fear.

IG Living also has:

An interview with a patient diagnosed with CIDP and their experience;
A great article on an unblended study on the option of Subcutaneous Immunoglobulin infusion for CIDP with the cost and other benefits discussed;
A great article on Chronic Conditions and Employment Law.

NEUROLOGY NOW is a magazine published several times a year. Slowly but surely we keep knocking at the door of the editors to get more articles on the Peripheral Neuropathies, beyond a poem or two. In the current issue they do have an article on Mystery Pain and if you read it, you will find many common themes that some of you with neuropathic pain will identify with quickly. The Neuropathy Association has a neat add on page 9 “Quick Tips – Managing Neuropathy” and on page 37 a page on our two great books on Peripheral Neuropathy. You can order a FREE subscription as a patient, family member, or care giver by going to www.neurologynow.com or call 800-879-1960 or look for a copy with subscription cards in you Neurologists office.
"COPING WITH A CHRONIC NEUROPATHY"


LECTURE and DISCUSSION

SATURDAY - JUNE 13TH - 10:00-11:30 AM


Shands Jacksonville Medical Center

580 West Eighth Street

Tower 1, 2nd Floor
Charter Theater



(Take Exit 353D (W. 8th Street) Eastward off I-95. Going East, see Shands Towers after approximately 3 blocks on Right; turn Right into driveway to park in front of Towers. Upon entering facility, sign-in and then take elevator on your right to the 2nd floor. Directional signs will be posted)


Welcome and Opening Remarks

Alan R. Berger, M.D.

Professor and Chairman / Dept. of Neurology
Assistant Dean for Research
University of Florida / Jacksonville
Director, Neuroscience Institute and Neuropathy Center
Shands Jacksonville



Featured Guest Speaker
Eugene B Richardson, MDiv, EDM, MS (Counseling)
Lt Colonel, USA (Retired)
Neuropathy patient for 41 years


Also Featuring

Mims Cushing, Jacksonville Author of

“YOU CAN COPE WITH PERIPHERAL NEUROPATHY”
&
“IF YOU'RE HAVING A CRUMMY DAY, BRUSH OFF THE CRUMBS"


Sponsors:

University of Florida and Shands Jacksonville Neuropathy Center

904-244-9922

The Neuropathy Association NYC

212-692-0662



RESERVATIONS RSVP 904-244-9304 For Information: 904-244-9719

COST IS FREE (Lecture Materials available for a fee)*****DRAWING for free copies of new neuropathy book


JUST FOR FUN:

When things in your life seem almost too much to handle, when 24 hours in a day are not enough or if in pain or exhausted from your illness, perhaps too much, or your legs and arms feel strange with neuropathy, or other body parts don’t work just quite right anymore, remember the mayonnaise jar and the 2 cups of coffee.

A professor stood before his philosophy class and had some items in front of him. When the class began, he wordlessly picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was full.

The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was full.

The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous “YES”.

The professor then produced two cups of coffee from under the table and poured the entire contents into the jar effectively filling the empty space between the sand. The students laughed.

“Now,” said the professor as the laughter subsided, “I want you to recognize that this jar represents your life with a chronic illness. The golf balls are the important things – God, your family, your children, your pet, and your friends. The golf balls are your ability to adapt to limitations or changes and the determination to find new meaning in life as your life is changed by illness. They are all the little free things like fresh cool area or the birds singing, waterfalls trickling into streams, majestic mountains or the sounds of the sea surf, as well as your favorite passions or new dreams – and if everything else was lost and only they remained, your life would still be full.

The pebbles are the other things that matter like your job, your house and your car. But, if you still have the golf balls, you can still survive losing even a pebble or two or three.

The sand is everything else – the small stuff. If you put the sand into the jar FIRST,” he continued, “there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you.

Pay attention to the things that are critical to your happiness. And by the way, there are healthy people who are unhappy and there are sick people who are happy. The difference is what they learn to do with the golf balls. So adapt your life to your limitations and do what you can do, ANYWAY. Play with your children. Spend time with your parents. Take a trip. Visit with grandparents. Take time to get medical help. Help someone else. Take your spouse out to dinner. Discover new meaning for your life. Perhaps, play another 18. Go to the mountains or visit the sea. There will always be time to clean the house and fix the disposal. Take care of the golf balls first – the things that really matter. Set your priorities. The rest is just sand.”

Then one of the students raised her hand and inquired what the coffee represented. The professor smiled, “I’m glad you asked.

The coffee just goes to show you that no matter how full your life may seem, there’s always room for a couple of cups of coffee with a friend or your spouse.”


Yours with a Smile,

/s/ Eugene

LtCol Eugene B. Richardson, USA Retired
BA, MDiv, EdM, MS, Graduate of the US Army War College

Patient with Chronic Polyneuropathies

Volunteer Leader, Writer, Educator, Advocate,

Florida Chapter, Neuropathy Support Network

The Neuropathy Association, NYC


Peripheral Neuropathy HELP and SUPPORT:

http://www.neuropathy.org

The Neuropathy Association is the leading national non-profit organization serving the peripheral neuropathy community. We provide support and education, advocate for patients’ interests, and promote research into the causes of and cures for neuropathy.

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