National Hepatitis Awareness Month

By: Kevin Maloney, Deputy Director, Community Access National Network (CANN)

This month is National Hepatitis Awareness month, and Tomorrow, May 19th has been designated by the U.S. Centers for Disease Control & Prevention (CDC) as National Hepatitis testing day.

It is estimated by the CDC that 1.2 million Americans are living with HIV-infection and it is estimated that 1 in 3 living with HIV-infection are also co-infected with Hepatitis B (HBV) or Hepatitis C (HCV). There is both acute and chronic Hepatitis C. Acute HCV is caught within the first 6 months of becoming infected, while chronic Hepatitis C can persist for as long as 20 + years, and both can be asymptomatic. Viral hepatitis progresses faster among persons with HIV-infection and persons who are infected with both viruses experience greater liver-related health problems than those who do not have HIV-infection. Although antiretroviral therapy has extended the life expectancy of persons with HIV-infection, liver disease—much of which is related to Hepatitis B and Hepatitis C infection—has become the leading cause of non-AIDS-related deaths among this population.

People living with HIV-infection who are co-infected with either Hepatitis B or Hepatitis C are at increased risk for serious, life-threatening complications. As a result, all persons living with HIV-infection should be tested for Hepatitis B and Hepatitis C by their doctors.

Hepatitis C increases the risk of death for patients with AIDS by 50%, according to the results of a large study published in the online edition of Clinical Infectious Diseases this month. A fifth of these deaths were attributable to liver-related causes, five times the rate seen in people with AIDS who were not co-infected. The investigators also found that a third of co-infected patients were unaware of their hepatitis C infection.

Below are some more facts from the CDC:

About 25% of individuals infected with HIV in the US are also infected with HCV, and an estimated 10% of individuals infected with HIV are coinfected with HBV.

About 80% of injection drug users (IDUs) with HIV infection also have HCV.

HIV coinfection more than triples the risk for liver disease, liver failure, and liver-related death from HCV.

About 20% of all new HBV infections and 10% of all new Hepatitis A (HAV) infections in the US are among MSM. For MSM not infected with HBV or HAV, any sexual activity with an infected person increases their risk. In particular, unprotected anal sex increases the risk for both HBV and HIV among MSM, and direct anal-oral contact increases the risk for HAV.

Compared with other age groups, a greater proportion (about 1 in 33) of persons aged 46–64 years are infected with HCV.

Chronic HCV is often "silent," and many persons can have the infection for 20 to 30 years without having symptoms or feeling sick.

In the US, HCV is twice as prevalent among blacks as among whites.

The following is some general information about Hepatitis C.

What are the symptoms of acute Hepatitis C?

Approximately 70%–80% of people with acute Hepatitis C do not have any symptoms. Some people, however, can have mild to severe symptoms soon after being infected, including:

Abnormal liver function tests (ALT/AST numbers)

Fever

Fatigue

Loss of appetite

Nausea

Vomiting

Abdominal pain

Dark urine

Clay-colored bowel movements

Joint pain

Jaundice (yellow color in the skin or eyes)

How is Hepatitis C spread?

Hepatitis C is spread when blood from a person infected with the Hepatitis C virus enters the body of someone who is not infected. Today, most people become infected with the Hepatitis C virus by sharing needles or other equipment to inject drugs. Before 1992, when widespread screening of the blood supply began in the United States, Hepatitis C was also commonly spread through blood transfusions and organ transplants.

People can become infected with the Hepatitis C virus during such activities as:

Sharing needles, syringes, or other equipment to inject drugs

Needle stick injuries in health care settings

Being born to a mother who has Hepatitis C

Particularly increasing and alarming is sexual transmission of HCV in large urban areas..ie..NYC, San Francisco, Washington D.C.

Less commonly, a person can also get Hepatitis C virus infection through sharing personal care items that may have come in contact with another person’s blood, such as razors or toothbrushes.

Treatment Options:

Hepatitis B and C can be cured. The earlier the infection is diagnosed the better there is a chance at curing it. Though, with new medicines and much more in the pipeline – chronic Hepatitis C sufferers are also finding it easier to cure Hepatitis C. Many clinics have the capability of doing rapid HCV screenings, much like the HIV test where a patient's status can be determined in 20 minutes. Treatment options for Hepatitis C are becoming more effective and less toxic to the body. !

FDA Sets Eyes on OraQuick's In-Home HIV Test

On May 15, 2012, the U.S. Food & Drug Administration (FDA) will discuss the safety and effectiveness of the OraQuick In-Home HIV Test. This is a test which consumers would be able to purchase over the counter, take home and in 20 minutes find out their HIV status. Who’s Positive conducted a Nationwide Survey and gathered responses from 1,569 participants.

Overall, the survey findings demonstrate support for rapid OTC testing - particularly from the HIV community - with approximately half of the respondents identified as people living with HIV/AIDS.  It should be noted that the survey was conducted online, and thus its findings are not scientific.  However, it offers some interesting insights.

Seventy-four percent (74%) of respondents said that they would support an OTC rapid, oral swab HIV test that could be purchased in a retail store, if approved by the FDA.

Other key findings of the survey found:

66% of the respondents who identify as a HIV-positive consumer support an OTC HIV test;

80% of those aged to 30 support an OTC HIV test;

A majority or nearly 52% of those who identified as a paid member of an HIV/AIDS organization support an OTC HIV test; and

47% of those who identify as one who performs HIV testing support an HIV OTC test.

“Our survey demonstrates widespread support for additional testing options, especially among younger generations and those who are already living with HIV,” said Tom Donohue, Founding Director of Who’s Positive. "Over-the-counter testing has the potential to break down barriers and empower people who have never been tested before to learn their HIV status and, if positive, find the care and support they need."

How will an over the counter test affect already cash strapped AIDS Drug Assistance Programs? The jury is still out on that. As of May 10, 2012, there are 2,759 individuals on ADAP waiting lists in ten (10) states, according to the National Alliance of State & Territorial AIDS Directors (NASTAD) report. The number of states with waiting lists and individuals on them held relatively steady from last week’s update with a total increase of 55 individuals.

The Folly of Waiting for Godot

By Jeffrey Lewis

Like the protagonists in Waiting for Godot, the 1.2 million Americans who are HIV-positive are anxiously waiting. But unlike the gentlemen in Samuel Beckett’s classic play who wait in vain for someone who never shows up, the HIV community is awaiting something that almost certainly will arrive in June. That is when the U.S. Supreme Court will deliver its decision on the constitutionality of the Affordable Care Act.

If the Court upholds the ACA, it would mark a decisive turn in the fight against AIDS. First, the Act would expand Medicaid so that lower-income HIV sufferers can get earlier access to treatment. And second, it would eliminate the “pre-existing condition” limitations that have made it all but impossible for many HIV-positive people to obtain private insurance. According to the National Minority AIDS Council, these two provisions would “prolong life potentially by decades for literally hundreds of thousands of persons.”

With the Court’s decision just a month or so away, it is tempting to cross our fingers, sit on our hands ---and wait.

We must not succumb to that temptation.

For one thing, there’s no guarantee that the ACA will survive. And even if it does, most of the Act’s major provisions won’t take effect until 2014, or even later ---longer than many HIV-positive folks can afford to wait, in particular, the 3,079 individuals on waiting lists in 10 states to gain access to their life-saving medications under the AIDS Drug Assistance Program. More important yet, under the ACA, the federal government will effectively quit paying for health care in 2019. And when the feds turn off the spigot, we’ll still be left with the bills.

When that happens, the results are predictable. Programs will be cut. The needy will take yet another step backwards. Those with HIV and other chronic conditions will again fall victim to the long knives of congressional and state appropriators. And those of us on the front lines of the AIDS battle will once again be asking “what do we do now?”

One thing we can’t do is expect the pharmaceutical industry to shoulder the burden alone.

Like any business or industry, pharmaceutical companies need revenue, capital for new investments and shareholders who demand that they earn a profit. That means there is a limit to how much they can cut prices ---and a limit to how much we should expect them to.

One thing pharmaceutical companies can do, however, is drop their resistance to the creation of a single, common, and industry-wide Patient Assistant Program enrollment form. This step alone would simplify the process, eliminate confusion, and make it far easier for assistance to reach the people who need it most.

But even if the industry gets on board, there would still be a host of legal and operational obstacles to creating a single, common and universally-accepted PAP form. Instead of asking the federal government to become involved, I believe there is a private sector solution.

EHIM ---the company for which I serve as Chief Operating Officer ---is currently reviewing every PAP form from every drug manufacturer. Our goal is to take the pharmaceutical industry a solution so excuse is not a four letter word.

Meanwhile, there is another major problem brewing that we need to get ahead of. An over-the-counter HIV test is on now the horizon. While this would be a major breakthrough in identifying people in need of help, it would also likely swamp already bloated AIDS ADAP waiting lists. At present, there are over three thousand people across 10 states who have received an HIV diagnosis ---and many more not yet ADAP-certified ---on these lists. Making them even longer isn’t an attractive option.

But that is exactly what will happen unless eligibility for ADAP is expanded and Congress agrees to a long term funding commitment. I hope the pharmaceutical industry will take the first step by agreeing to allow any person with HIV and without prescription drug insurance coverage to be eligible for the ADAP solution.

Committing ourselves to ensuring that anyone with HIV but no insurance gets help would stop a race to the bottom in which states steadily lower ADAP income eligibility requirements. And in the long run, it would actually save money by slowing the flood of patients going to ERs because they don’t have access to medication.

Finally, there is one more thing to which all of us must commit. And that is to bring civility, respect and the word compromise back into our politics and national discourse. Who among us is infallible or has all the answers? Today ---more than ever- -we need intelligent public policy, not blind partisanship. HIV has no political affiliation; everyone who suffers from it is a member of our family ---the human family.

Jeffrey Lewis is the Chief Operating Officer at EHIMRx and the former President of the Heinz Family Philanthropies. He can be reached at jeffrey13@ehimrx.com. This material was part of his keynote address at the recent HIV Summit in Washington, DC. Lewis is also the past recipient of the ADAP Advocacy Association's ADAP Champion Award.