Why Haven't Government Officials Notified Individuals Who Received Tainted Blood?

      It seems hard to imagine, but it's true. A new congressional report states that more than one million Americans received blood from donors who subsequently tested positive for hepatitis C. Yet most of the recipients don't know that, and no one is notifying them.

Congressional Report

      On October 8, 1998, the House Committee on Government Reform and Oversight released a report, "Hepatitis C: Silent Epidemic, Mute Public Health Response," that criticizes the Department of Health and Human Services (HHS) for failing to respond to the hepatitis C epidemic. It explains that the disease has now spread to an estimated 4 million Americans. The report also notes that the total societal cost is more than $600 million per year.

FDA Has Known for Years

      What's most disturbing about the report is that it acknowledges that the Food and Drug Administration (FDA), which regulates the blood banking industry, has known about the tainted blood situation since at least 1989, but hasn't informed patients.

      According to the report, FDA officials met on seven different occasions between 1989 and 1994 to decide whether to notify the blood recipients. (The report notes that the hepatitis C virus was first unmasked in 1989.) The FDA refrained from recommending notification because "no clear consensus on the public health benefit of such action had emerged." Yet, treatment options were available to infected persons if they had been told of their infection, according to the report.

      Additionally, at a September 9, 1998 Congressional hearing, the FDA's Dr. Jay Epstein reported that the blood banks informed FDA that notification letters had been sent to recipients. However, Dr. Epstein acknowledged that the FDA had no independent verification that this had occurred and was simply relying on the blood banks' unwritten assurances, according to the Congressional report.

      Another FDA witness, Dr. Michael Friedman, admitted that no recipient of hepatitis C-infected blood products had yet received a letter about possible infection, the report says.

Notification Recommended, But Not Required

      Congress began holding hearings about the blood-related hepatitis C epidemic in 1995, years after individuals received the tainted blood. At that time, the House Committee on Government Reform and Oversight recommended that HHS establish a comprehensive program to notify the recipients. But as we now know, that didn't happen.

      Instead, the FDA issued guidelines merely recommending that blood banks notify them. No one is being held responsible for this, however. That is disturbing because according to the Centers for Disease Control (CDC), hepatitis can linger without symptoms for more than 20 years, then produce profound health consequences, including liver failure and cancer.

What If Alternative Providers Had Done It?

      What do you think would have happened if alternative providers or vitamin manufacturers unknowingly sold a product that infected Americans with a deadly disease?

      The FDA would have put those providers out of business! Those providers would probably be locked up for years, fined thousands of dollars, and be forced to notify all recipients of their dangerous product.

      However, the medical industry is not being held accountable for directly notifying all recipients of tainted blood, nor is the government helping in a truly effective way. Moreover, it appears that public health officials are allowing individuals to unknowingly spread hepatitis C.

      What's going to happen next? Will the CDC soon recommend, and then states mandate, that all children must be vaccinated against hepatitis C, like they're currently doing for hepatitis B?

At Least 300,000 Infected

      The CDC estimates that approximately 300,000 people have contracted hepatitis C from infected blood since 1990. According to the Congressional report, the first test for the hepatitis C virus became available in 1990. A second, more accurate test was introduced in 1992. CDC provides an estimate for the number of transmissions after 1990, and not before.

      CDC claims that "it is not possible to estimate the TOTAL number of living persons with transfusion-associated HCV [hepatitis C virus] infection from the look back estimates, since these estimates do not extend before 1990."

      Out of the 4 million persons living with hepatitis C, the government is not exactly sure how many contracted their disease from tainted blood before 1990.

Protect Yourself and Your Family

      If you or a loved one is to receive blood or blood products, you should inquire about the chances of its being tainted. Don't be surprised to hear a response such as, "Oh, don't worry. We test blood for everything today." Even so, get your assurances in writing when you sign your informed-consent form (giving permission for surgery and the blood transfusion).

      You might also want to ask your blood bank and hospital for assurance that you will be notified of any "look back" discoveries that you received a tainted blood transfusion.

      If you've received blood over the past few decades, contact your doctor, hospital, or local blood bank to find out whether you could have contracted hepatitis C. Be prepared for the friction you might encounter for doing your own investigation.

      It is obvious we can't count on HHS, FDA, or CDC to guarantee notification, so take the responsibility for yourself. It's your life you're protecting!

Note: This information is not intended as medical advice. Consult a physician regarding your chances of contracting hepatitis C through blood or blood products.

This article originally appeared in the January/February 1999 issue of Health Freedom Watch.