IVIG intravenous therapy a life saver for many
Nov. 7, 2007 (KGO) (KGO) -- For people suffering from an immune deficiency, immunity therapy can be life saving. It's called IVIG, an intravenous treatment that's also effective for certain autoimmune disorders and neurological conditions.
But it is costly, and now many insurance companies are clamping down on covering it; with devastating results for patients.
Gram for gram this fluid is more expensive than gold. It's intravenous immune globulin, or IVIG, a biological product derived from human blood.
For patients like Dominick Spatafora, it's far more valuable than gold as well.
"This was an absolute miracle drug, from my very first infusion; I gained back the use of my fingers. The tremor stopped completely, it went away, all my symptoms disappeared immediately," said IVIG patient Dominick Spatafora.
Dominick suffers from multi-focal motor neuropathy, a debilitating neurological condition that can lead to paralysis.
"Probably at two or three spots along the nerve, antibodies kind of get into the nerve and inflame it and interfere with its function. The treatment IVIG is able to get rid of antibodies and inflammation," said neurologist Dr. Jonathan Katz.
For Dominick's condition, IVIG is considered a first line defense, even though it's not FDA approved for his neuropathy.
In 2005, Dominick's health plan told him it would no longer cover his $80,000 dollar a year treatment; a decision that coincided Medicare's lowering the reimbursement rates for IVIG.
"I did wake up one Sunday morning, and I'll never forget this, and I had completely lost the use of the fingers in my right hand. Being 31-years-old at the time, owning my own business, relying on my Blackberry, it was absolutely devastating," said Spatafora.
"So we know it works, but even despite knowing all that, some payers will say its not FDA approved which makes everybody furious, because everybody's sitting there scratching their heads. Who cares if its FDA approved, this thing works perfectly well," said Dr. Katz.
And advocates point out these denials can have deadly consequences.
"We know of nine Medicare patients who have died so far," said Michelle Vogel from the Alliance for Plasma Therapies.
Michelle Vogel heads the non-profit "Alliance for Plasma Therapies" in Washington D.C.
"We're hearing more and more patients getting letters from their insurance companies, getting their explanation of benefit forms saying their therapies are now being considered experimental or medically not necessary after being on IVIG for years and being effective," said Michelle.
That's what happened to Simone Biase. After three and a half years on IVIG to treat her multiple sclerosis, her insurance is no longer paying for it.
"It's costing about $4,000 dollars a month," said IVIG patient Simone Biase.
She's paying for it herself for now while appealing her insurance company's decision and trying to stretch her monthly treatments.
"I went as far as eight weeks at one point and I get to the point where I just felt my old symptoms were back and I couldn't lift things and I didn't want to walk," said Biase.
With IVIG, she's been able to work and take care of her grandson.
"When you talk about cost, you're not just talking about the cost of the infusions of the medicine, you're talking about the cost of somebody being sick and missing work and being depressed, and having an arm that doesn't work, and that is clearly another kind of cost that's incredibly important," said Dr. Katz.
Neurologist Jonathan Katz of California Pacific Medical Center has seen miraculous results with IVIG for some patients, but not all will react the same.
The only way to tell if IVIG will work he says is to try it and then, it must be carefully monitored.
"And then you'll have value judgments in the middle," said Dr. Katz.
"These are really rare disease groups, and it has to be done based not just on the clinical science, but based on what the physician sees treating the patient, how the patient reacts," said Vogel.
Problems with access are expected to grow worse. Medicare just announced another cut in reimbursement rates-- this one impacting hospitals.
Meanwhile, demand for IVIG has risen sharply in the past decade according to an analysis by the Department of Health and Human Services. And since IVIG is derived from blood, there is not a limitless supply, making the price volatile.
Simone says she won't give up fighting for her share.
"I've seen what happens without it and I don't feel it's worthwhile being here if I have to be in the state I was in before," said Biase.
"It's scary, it's awful there's a drug that can keep you alive and the one your doctor prescribes for you knowing that it's helping you, but you can't get it," said Spatafora.
Dominick won the battle with his insurance company, regaining his IVIG and the use of his hand. But he's still worried about the future and other patients being denied their treatment.
Last year, he created the non-profit "Neuropathy Action Foundation."
In March, Dominick organized this news conference on the Capitol steps in Sacramento to draw attention to the IVIG crisis.
He's advocating Medicare re-adjust its reimbursement rates for IVIG, and he's looking to California's delegation in Congress to help.
"We want them to act, we want them to act for the benefit of their constituents, we want them to save lives, we want them to prevent anymore unnecessary deaths from occurring," said Spatafora.
Protecting a liquid lifeline.
The California Association of Health Plans tells us: Members have a well established option to ensure they are covered for medically effective treatments. It starts by asking their plan for an independent medical review."
To read bout the latest Medicare changes impacting IVIG click on The Back Story
For more information on access to plasma therapies, go to The Alliance for Plasma Therapies.
For more about the IVIG treatment, to go The Neuropathy Action Foundation
- Brisk sales raise Mega Millions jackpot to $425M
- Photos: Colorado high school shooting 35 min ago
- Icy roads creating dangerous driving conditions
- Vigils to mark first anniversary of Newtown shooting
- Knife-wielding man arrested for grocery store robbery
- String of water mains break overnight in Millbrae
- Bay Area New Year's Eve fireworks and events
- Winter Spare the Air called through Saturday
- roundup: SF stabbing; Water main breaks
- weather: Bay Area weather forecast for Friday