"I'm totally 100 percent debilitated in seven weeks," said Jonaitis.
She has neuropathy -- a condition where a person's immune system attacks the nerves. It disrupts the body's ability to communicate with muscles and joints.
"The liquid gold, it'll fix me right up," said Jonaitis.
That liquid is called Intravenous Immunoglobulin or IVIG. It's made up of antibodies collected and filtered from thousands of blood donors. It's often referred to as liquid gold because of the cost -- up to $20,000 a treatment.
"It is truly the difference between not being able to function and function," said Dr. Alan Berger.
The infusion clears harmful antibodies from the body and reduces inflammation. Merilyn has to sit through seven hour infusions twice every month or else it wears off.
"She literally goes from being completely off balance in her walking, to where she cannot stand, or walk without a wheelchair, to getting the immunoglobulin and two or three days later, being totally normal," said Dr. Berger.
"Where would I go? How would I survive? I could not survive without the drug," said Jonaitis.
Merilyn's Medicare plan and insurance covers the high cost for now, but according to the Alliance for Plasma Therapies, reimbursement rates are going down and some insurance companies deny coverage altogether.
"It's impractical for patients to get this on their own," said Dr. Berger.
For Merilyn, it's treatment that's worth more than gold.
"Without it I think I would die. I don't think that's a great stretch of my imagination either," said Jonaitis.
Dr. Berger says IVIG therapy could also be helpful for multiple sclerosis patients, but everyone reacts differently to the treatment.
The demand for IVIG has risen sharply over the past decade, but a shortage of blood donors is driving up the price.
TOPIC: LIQUID GOLD: A MIRACLE DRUG?
BACKGROUND:
Neuropathy is a disorder of the peripheral nerves -- the motor,
sensory and autonomic nerves that connect the spinal cord to muscles, skin and internal organs. It afflicts more than 20 million Americans. This progressive disease primarily affects the hands and feet, causing tingling, numbness, weakness and pain. There are many causes of neuropathy.
Approximately 30 percent of neuropathies are idiopathic, or of an unknown cause. In another 30 percent of cases, the cause is diabetes. Other neuropathy causes include autoimmune disorders, tumors, heredity, nutritional imbalances, infections or toxins.
IVIG: Intravenous Immunoglobulin, or IVIG, is a pooled blood product, meaning each dose is made up of particles from hundreds of blood donors. Antibodies are extracted from the plasma of the blood and then filtered thoroughly before being pooled and then concentrated. All viruses are deactivated and filtered out, making the final product very safe. No one knows for certain how IVIG works, but it's thought to regulate antibody response and production while also limiting inflammation in the body. Eventually, the recipient's body clears or neutralizes the antibodies causing the effects of the drug to wear off. This takes about four to six weeks depending on the patient. Once the effects have worn off, another infusion is needed.
IVIG is approved by the FDA for the following uses:
- Allogeneic bone marrow transplant
- Chronic lymphocytic leukemia
- Pediatric HIV
- Primary immunodeficiencies
- Kawasaki disease
- Alzheimer's disease
- Kidney transplant (with a high antibody recipient or with an ABO incompatible donor)
- Common variable immune deficiency
IVIG therapy can mean the difference between immobility and an unrestrained lifestyle for some neuropathy patients; but because so many donors are used to make a single dose and because of the high price tag on the drug, there are some concerns about extended availability. "We've gone through periods of times where, because the manufacturer has had to cut back on production, that it's been almost impossible to get," Alan Berger, M.D., a professor of neurology at the University of Florida School of Medicine in Jacksonville, Fla., told Ivanhoe. "During those times when production has faltered, there's been a real difficulty in obtaining the immunoglobulin."
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