By Julie Steenhuysen
Reuters

Only half of people in the United States who have ever been infected with hepatitis C get proper testing for the liver-destroying disease, U.S. health officials said on Tuesday. 

Proper testing is a two-step process in which people who have antibodies get referred for a second more sophisticated test to detect the virus.

According to the U.S. Centers for Disease Control and Prevention, many people who have taken a blood test showing they have been infected with the virus do not get the necessary follow-up testing indicating whether they still need treatment.

"Complete testing is critical to ensure that those who are infected receive the care and treatment for hepatitis C that they need in order to prevent liver cancer and other serious and potentially deadly health consequences," CDC Director Dr. Thomas Frieden said in a statement.

For its study in the CDC publication Vital Signs, researchers looked at data from eight areas across the nation. Of the hepatitis C cases detected with antibody testing, only 51 percent also included a follow-up test result that identified current infection, meaning they were likely unaware if they were still infected with the virus.

As a result of the findings, the CDC is issuing guidelines urging doctors to do follow-up testing on patients to ensure they get the proper treatment.

Hepatitis C, which is transmitted through the blood, kills more than 15,000 Americans each year, mostly from hepatitis C-related illness, such as cirrhosis and liver cancer.

Although a small number of people who test positive for antibodies to hepatitis C infection can clear the virus on their own, about 80 percent of those who test positive remain infected and can develop significant complications from the disease.

In August, the CDC issued new guidelines recommending that all baby boomers be tested for hepatitis C, citing studies suggesting more than 2 million Americans born between 1945 and 1965 may be infected with the virus.

The agency had previously recommended testing only in individuals with certain known risk factors for the infection. It estimates that around 3.2 million Americans are chronically infected with hepatitis C.

The testing may help people get treatment with newly available therapies that can cure around 75 percent of infections.

The field has attracted broad interest with two new hepatitis C drugs, Incivek from Vertex Pharmaceuticals Inc and Merck & Co's Victrelis.

Companies including Gilead Sciences Inc aim to improve on those medicines with pill-only regimens.

Luis Robayo / AFP - Getty Images file

A plan to urge hepatitis C testing for all baby boomers could promote treatment and save lives, but a positive result could also cause problems getting various kinds of insurance.

A government proposal that all baby boomers get tested for hepatitis C may be drawing high praise for its potential health benefits, but it’s also raising questions about the unintended consequences of screening for those seeking insurance.

Experts in health insurance, life insurance and long-term care insurance warn that boomers who test positive for the blood-borne virus before being approved may dash their chances for coverage.

“I would never, ever tell anybody to delay getting any kind of medical exam,” said Jesse Slome, executive director of the American Association for Long-Term Care Insurance. “But you have an advantage over the insurance company if you apply for insurance before undergoing any kind of medical checkups.”

For the first time, government health officials suggested in May that anyone born between 1945 and 1965 be tested for the hepatitis C virus, which can destroy the liver.

The draft proposal, which could see a final ruling later this year, is aimed at getting some 800,000 baby boomers into treatment and potentially saving more than 120,000 lives, according to the Centers for Disease Control and Prevention.

Baby boomers make up about 2 million of the estimated 3.2 million people infected with hepatitis C, the CDC says. About three-quarters of those who have the virus don’t know it -- and many don’t think they’re at risk for it, said Dr. John Ward, director for the Division for Viral Hepatitis.

“Testing is the only way to identify these individuals in order to connect them to life-saving care and treatment,” he said.

Hepatitis C is spread through contact with contaminated blood or organs. It was widely transmitted through routine health care practices before the virus was identified in 1989 and before widespread screening of the U.S. blood supply began in 1992.

Social practices such as injection drug use and tattooing contributed to the problem, but so did unexpected transmission from routine exposures such as sharing toothbrushes or razors, even manicures and pedicures.

Getting tested may confirm the unsuspected exposure and prompt treatment, a plan that’s drawing praise from many of the dozens who publicly commented on the CDC’s draft proposal.

“This birth cohort screening, in my opinion, is the right methodology at the right time,” wrote Dr. Donald Jensen, a clinical and research expert in hepatitis at the University of Chicago. “The baby boomers are aging and need to be identified quickly before their disease and co-morbidities overtake them.”

But a positive test for hepatitis C also can raise worries for those who aren’t insured or who want more or different insurance.

“I am concerned that this will allow insurance companies to deny treatment for pre-existing conditions,” wrote Donna Bailey, a consumer commenter on the site.

Even treatment for hepatitis C might not guarantee acceptance since current protocols may not be 100 percent effective.

It’s true that hepatitis C is one of several chronic, life-threatening diseases that can exclude people from being insured, said Susan M. Pisano, vice president of communications for America’s Health Insurance Plans, the national trade association representing the industry.

“You would have a condition if you were diagnosed, the same way you’d have a condition if you had asthma, diabetes or another condition,” she said.

The difference is, a leading government health agency is suddenly recommending that an entire generation be screened for the condition in question. 

CDC officials say they’ve considered the problem. About two out of three people diagnosed with hepatitis C have health insurance -- but about a third of those diagnosed do not, officials said.

“Considerations regarding insurance coverage are real, affecting individuals and their loved ones ... ” Ward said in a statement to msnbc.com. “ ... These issues are ones we must continue to consider as part of any implementation of these recommendations.”

Under the Obama Administration’s health reform law, insurers would not be able to reject adults with hepatitis C or another pre-existing condition starting in 2014. But the Supreme Court is expected to rule within the week on overturning all or part of the Affordable Care Act, so that mandate is unclear.

Anticipating that the hepatitis C proposal may become final, CDC officials are working with insurance providers, public health agencies, commercial labs and others to coordinate the mechanics of such large-scale testing.

Until something changes, at least one insurance broker advises his clients to think about the consequences of the test results.

“It’s up to you,” said Michael McDonnell, a financial adviser who works at Individual Commercial Brokerage in northern California. “Test or not, insure or not. If you’re going to insure, wait until you are approved before doing the test.”

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A new proposal by health officials to get all baby boomers tested for hepatitis C may face some pushback from the very generation it’s intended to help.

Early comments from those born between 1945 and 1965 reveal some skepticism about the call for a one-time blood test for everyone to detect the liver-wrecking virus, recommended last week by the Centers for Disease Control and Prevention.

“I’d be much more concerned if I had some risk factors,” groused one boomer on an msnbc.com website, while another asked government health officials to explain “how a whole generation could be infected?”

Easy, responded CDC officials, who noted that baby boomers already account for 2 million of the 3.2 million people infected with the blood-borne virus, amounting to 1 in every 30 people in that age group.

Many, many more boomers likely don’t know that they’re infected, primarily because they’ve never been tested and don’t believe they fall in traditional high-risk groups, said Dr. John Ward, director of the division of viral hepatitis at the CDC center that monitors the disease.

“For this generation, we feel that many people don’t know the exposures that could have resulted in transmission,” he said.

Most people understand that hepatitis C is spread by contact with contaminated blood or organs and unsafe practices such as injection drug use.

They may even understand that the risk was much higher before 1992, when widespread screening of the blood supply began in the U.S.

But, Ward says, it’s not widely known or appreciated that there may have been other ways to become infected without knowing it before hepatitis C was identified in 1989.

“In the period of time before the virus was discovered, in the 1970s and 1980s, there were just more exposures,” he said. “It almost certainly happened more back then.”

In addition to transmission through blood and organ donations, the virus frequently was transmitted accidentally through other routine health care settings and treatments, Ward said.  

But it also may have been transmitted through tattoos, through sharing toothbrushes or sharing razors, even during manicures and pedicures. Any action that results in even microscopic amounts of blood can pass on the virus. 

All it takes is a one-time exposure, noted Ward. Because it might have occurred decades ago, some boomers might not remember the event -- or they might want to forget it.

“People did get infected through injection drug use and some people don’t want to admit that,” he said. Others could have been infected while using other drugs, such as cocaine, in which a shared appliance came in contact with mucous membranes and blood. Hepatitis C can also be spread sexually. 

The bottom line, said Ward, is that getting tested could lead an estimated 800,000 baby boomers to get treatment for hepatitis C and save some 120,000 lives.  

New treatments can cure up to 75 percent of hepatitis C cases and avoid a leading cause of liver cancer.

As it stands now, more than 15,000 people a year die from hepatitis-related conditions. The virus is the leading cause of liver transplants and the fastest-rising cause of all cancer-related deaths, according to the CDC.

Boomers who want to comment on the plan will get a chance starting Tuesday at www.regulations.gov, docket number CDC-2012-0005. Comments will be accepted through June 8 and a decision about the proposal will be made later this year. 

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