Lifewatch: Liquid gold

Reported by Claire Hosmann - email
Posted by Debra Worley - email

(WECT) - More than 20 million Americans suffer from some form of a crippling condition that makes walking difficult and painful.

A new treatment called liquid gold is taking some of that pain away.

Every step is a struggle for retired nurse Merilyn 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.

Merilyn uses a gold liquid called intravenous immunoglobulin (IVIG) which is made up of antibodies collected and filtered from thousands of blood donors.  It is often referred to as liquid gold because it costs up to $20,000 a treatment.

The infusion clears harmful antibodies from the body and reduces inflammation.  Merilyn sits through two, seven hour infusions every month, otherwise the treatment 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. Alan Berger, a Professor of Neurology at the University of Florida.

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 any coverage.

Berger says IVIG therapy could be helpful for multiple sclerosis patients, but everyone reacts differently to the treatment.

The demand for IVIG has sharply risen over the past decade, but a shortage of blood donors is driving up the price.

For more information, please contact:
Shands Jacksonville Neuroscience Institute
(904) 244-3960

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

SCARCITY SCARES: 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."