In The Shadows

In 1987, President Ronald Reagan declared it Public Enemy No. 1. By then, it had killed nearly 20,000 Americans. Two decades ago, fear was spreading as fast as the infection rate, with good reason. Back then, the diagnosis was a death sentence for all who contracted acquired immune deficiency syndrome – AIDS.
Statistics show that the death rate has slowed over the past 20 years as treatment has improved, but AIDS is not going away any time soon. In Missouri, AIDS has claimed the lives of more than 5,000 people. Another 10,000 are living with the disease, according to the state Department of Health and Senior Services.
More than 400 people in central Missouri are living with human immunodeficiency virus, which is the virus that causes AIDS, and another 25 are diagnosed each year.
According to the U.S. Centers for Disease Control and Prevention, there are currently more than 1 million Americans living with HIV. Each year another 40,000 are diagnosed. Missouri ranks 17th out of the 50 states in the number of residents infected with the virus; the state Health Department reports another 3,000 may be infected, but remain undiagnosed and unaware of their status.

Forgotten But Not Gone

What comes to mind when you think of AIDS? Many advocates pushing for increased awareness about the disease say there is still a stigma attached to the acronym, but what was once viewed as a problem confined to homosexuals and drug addicts is now a threat to everyone. The number of HIV-positive individuals living in mid-Missouri has increased by more than 25 percent in the past five years.
AIDS is the final stage of an infection of the human immunodeficiency virus, according to the CDC. An HIV-positive patient is diagnosed with AIDS when the virus has so weakened the immune system that the body has a difficult time fighting infection. The group of symptoms that collectively characterize AIDS can include the development of certain infections and/or cancers, and a decrease in the level of infection-fighting cells in the immune system.
But this fatal disease process starts with HIV. Researchers and activists say no one can hide from HIV. The virus does not discriminate, affecting all genders, races and sexual preferences. All types of sexually transmitted disease cases are on the upswing, and HIV is no exception.
Cale Mitchell, executive director of Regional AIDS Interfaith Network, says there has been a 1 to 2 percent increase in local HIV rates every year; it spiked to 6 percent in the last year.
In 2007, there were 359 cases of syphilis reported in Missouri; 37 percent of those individuals were also infected with HIV, Mitchell says.
RAIN was started 16 years ago by a local group of citizens concerned by the outbreak of HIV/AIDS. The organization has grown to offer case management and is now able to connect individuals to health care and community resources.
“Now, 16 years later, RAIN is prevention, education, care and connection,” Mitchell says. The organization covers 33 counties in mid-Missouri and provides resources for hepatitis C, HIV and sexually transmitted diseases.
Mitchell reports that syphilis rates are spiraling out of control in metropolitan areas such as Kansas City and St. Louis. That’s important for Columbia, he says, because many locals travel to those communities for their social life. The spike in syphilis rates isn’t going to happen at the same time, but Mitchell says it’s reasonable to assume it’s going to occur here soon.
“That’s particularly alarming,” he says, “and then you have chlamydia and gonorrhea rates [in Sedalia] that are the highest not only in the state, but edging out national numbers. It’s not a huge population base, but your rate of occurrence is so much higher than it is everywhere else.”

Teens In Trouble

Liz Rettke is board president for local HIV/AIDS resource organization Trail to a Cure. A mother of four, one of her greatest concerns is that teenagers are not practicing safe sex.
“I don’t advocate teenagers having sex,” Rettke says. “My children know I don’t think you’re prepared for it. But I’m thinking, still, all these kids are not having safe sex, which means that the STDs are on the rise, which means that HIV is potentially coming in a whole other wave.”
Rettke knows she has to sit down with her kids and go through those uncomfortable situations and conversations.
“Who wants to sit across the table from your 14-year-old son and what 14-year-old son wants to sit across the table from Mom and hear the word ‘condom’ come up?” she asks.
But, Rettke says, parents must instill education and awareness in their children at home in partnership with what they are taught at school.
“It’s important to me that they gain the correct information from me or from another educated adult, not from their peers,” she says. “So again, having that open communication with kids is extremely important.”

Risk And Responsibility

In the United States, 50 percent of all new HIV infections occur among people younger than 25. State statistics show that nearly 7 out of 10 HIV/AIDS cases in central Missouri have been diagnosed in people ages 25 to 44. About 16 percent of cases have occurred in those 45 to 64 years of age, and about 10 percent were between the ages of 13 and 24.
State statistics also show that in central Missouri, more than half of HIV/AIDS cases have been among men who have sex with men. Heterosexual transmission accounts for nearly 1 in 5 cases, or about 18 percent. Another 13 percent of cases are injection drug users, half of whom also engage in homosexual contact.
AIDS can affect any human being, any race, any religion, Rettke says. It doesn’t matter who you are or where you are; it can get anyone who doesn’t act with personal responsibility.
“It’s not a demographic-specific issue,” Mitchell says. “It is not just about individuals who identify as gay; it is not just about individuals who identify as needle drug users. It’s coming from somewhere ? you don’t catch it from the air. You get it from another person and it’s generally risky sexual behavior that’s your exposure.”
As Joe Jerek, an active member of Trail to a Cure describes it: Everyone knows someone who is either infected by HIV/AIDS or affected by HIV/AIDS. It could be someone who sits next to you at church, who works with you, who teaches your children, who is in class with your children, who shops with you at the same grocery store, who lives in your neighborhood, who rides in your carpool. It’s around us and it tends to become invisible, Jerek says, but it’s still here.

Conversation Starters

Mitchell says a key concept in slowing and eventually stopping the spread of HIV is continuing conversations to alert people that it is out there.
RAIN has recently refocused on education and awareness for youth and the homeless.
“There are specific programs geared toward those individuals to make better decisions,” Mitchell says. “And that’s really what it’s about: arming them with enough information so they can protect themselves and make healthy decisions.”
Recently, a client came into the care of RAIN whose family had put him on the back porch to die. His fiancé found him lying outside drooling, unable to move or speak. His sister had told the children in the house not to touch anything he had touched. He had his own set of silverware and dishes so he wouldn’t infect the others in the home.
“There is still a lot of community education to do,” Mitchell says. “There was a period of time when it was talked about enough that people understood, but now there is almost an entire generation that didn’t get those messages.”
These days, HIV/AIDS is often viewed as a chronic illness and lumped together with diseases such as Alzheimer’s, diabetes or cancer.
“It gets difficult to start differentiating yourself from every other chronic disease out there,” Mitchell says.
It’s more comfortable, he says, to show cute children who have disabilities than to have conversations about an adult who is going through something people normally wouldn’t discuss at the dinner table: sexual preference or drug use.
“I don’t think I’m going to be the person who changes the overall attitude,” he says, “But just to shake that conversation a little bit is all I’m looking to do.”
Rettke agrees. “People don’t realize ? they don’t plug in the fact that it’s a nondiscriminatory disease. AIDS can affect any human being, any race, any religion. It doesn’t matter who you are, where you are; it can get any of us if we’re not acting with personal responsibility.”
“You just can’t do enough to protect yourself and you certainly can’t rely on anyone else to do it for you,” Mitchell says.

Working With HIV/AIDS

Rain also sees many clients who run into trouble with their work situation. Many view their employment status as stable until the time comes for them to enroll in the benefits program. When their disease is disclosed, their employment situation changes. Sometimes they are let go or find their position is no longer needed.
“It absolutely still happens,” Mitchell says. “Are they supposed to? Absolutely not, but it doesn’t mean that they don’t.”
Mitchell says it is easier for HIV-positive individuals to work for larger corporations than in a smaller office where it’s more likely that a significant insurance rate spike will be noticed.
Rettke has had HIV-positive friends who are afraid to change jobs because of the health insurance exam required by new companies.
“So they’ll stay in a job they’re not happy in because they can’t risk losing their benefits,” she says. “It’s appalling that we still discriminate over something like this as a culture.”
Jerek believes it comes down to fear and ignorance.
“Part of this is changing that fear to compassion and ignorance to knowledge,” he says.

Treatments That Work … Until They Don’t

Like so many, Trail to a Cure vice chair Michael Patterson has firsthand experience with HIV/AIDS. He was around when the epidemic first broke out and little was known about the disease. There was awareness about sexually transmitted diseases, but “HIV was different because it could end your life and it was doing just that,” he says.
Patterson has lost two partners to the disease and has watched family and loved ones die around him.
“Every sexually active person, adults or adolescents, really ought to be tested once a year, even in a monogamous relationship,” he says.
Patterson, who works closely with the American Foundation for AIDS Research, says the common view of HIV infection has evolved to one of a manageable, chronic illness because death rates have dramatically decreased due to developments in medication
“That’s not the case. People continue to die,” he says.
Infected patients often become resistant to the medications they are taking within two years because HIV mutates at such a high frequency, Patterson says. Some individuals are attacked by drug-resistant strings of bacteria; others have to switch medications that may not be effective, he says.
According to amFAR, 1 or 2 out of every 10 people newly diagnosed with HIV are acquiring strains that are resistant to current drug therapies. The foundation also reports that in individuals initially responding well to combination drug therapies, about 50 percent experience treatment failure within two years.
“I think a lot of young people see people living with the disease instead of dying from it,” says Rettke. “I’m really concerned about the next generation of teenagers and I’m really concerned about the college-age kids that are just living in the moment and not thinking ahead and not taking responsibility for their actions. They think, if I get HIV, I’ll live with it.”
The reality is, she says, the drugs that are out there right now lose efficacy down the road and they don’t realize they might be one of the “unlucky” ones who can’t be helped by the drugs.
“You don’t see the coverage of the problem anymore, but it still persists,” says Patterson. “There are strong indicators that there is a resurgence coming.”

What Is HIV/AIDS?

Dr. Brian Johnson, a physician specializing in infectious disease at Boone Hospital Center, explains HIV as a virus that attacks the human immune system and destroys white blood cells that are key in the immune system.
“What HIV does is weaken the human immune system so it can no longer fight very common organisms,” he says.
Johnson illustrates with the example of pneumocystis, a form of pneumonia. Many people are exposed to the organism and do not even know it. Those who have a crippled immune system and are exposed to it, such as HIV-positive individuals, will become very ill.
An individual is diagnosed with AIDS when the patient’s CD4 (a type of lymphocyte, or white blood cell) count falls below 200 or if certain opportunistic infections are present. The level of CD4 cells can be largely affected by infection, Johnson says.

John’s Story

John* is a Columbian living with human immunodeficiency virus. A newcomer to mid-Missouri, he recently moved here looking for postgraduate education and employment. Several months passed and he found himself still unemployed. Having exhausted his savings, he was isolated and alone in a town he hardly knew. One day, not feeling 100 percent, he went to the local health department. That’s when he learned he had tested positive for HIV.
“Needless to say, that was shocking,” he said. “It was just one more thing thrown at me.”
As a sexually active gay male in his 40s, John had been getting tested every six months for many years.
“I tried to play by the rules as much as possible, practicing safe sex and ongoing testing,” he says, “but maybe wasn’t as responsible as I should have been.” There was an initial shock in finding out he was HIV positive, he says, “but the probability factor is that you can only dodge bullets for so long. Any person that is sexually active needs to get tested regularly, be aware, be educated, be safe.”
The health department referred John to RAIN, the regional resource organization for prevention, detection and case management of sexually transmitted diseases, where he found the support and empathy he needed.
“The services they provided were life-saving,” he says. “I was unemployed, uninsured and had found myself in a very precarious situation.”
RAIN was able to connect John with health services for the HIV infection and other medical care, including vision, dental and mental health coverage.
“When you get diagnosed with something like this,” he says, “you go through all the stages ? denial, anger.”
He says it’s irrelevant to go over and over in his mind how he contracted the virus or the “what ifs.” Since he can’t change what happened, “Why waste energies on blame or guilt or useless emotions?” he asks, preferring to focus on making the best out of the life he has.
John has since found a job and become an active part of the community. He has developed a good support system and network of people that he can talk to; some are HIV-positive and some are not. If John was still living back home, he doesn’t believe he would have the support and care that he has found in Columbia.
“I’ve made some really beloved friends who are some of the most compassionate people that I’ve known,” he says. “Gay, straight, black, white, men, women – it’s a great sense of community.”
Since testing positive, he reacts differently to simple things such as a cut, developing a cough or slight fatigue. Sometimes he avoids situations because he worries about injury or exposure.
“It makes you think about things a lot more and makes you very conscious,” he says. “I have to look at my future differently, you know, I may not have 40 years.”
John is not currently on any medications and he hopes to stay that way for as long as possible. A better diet and regular exercise have improved his health. “It is so much more important now,” he says.
Life, he says, “is all in the attitude.” He could choose to give up or choose to work his hardest to live life to the fullest.
“Trust me, there are days when I still get a little freaked out,” he says. “We have choices in life. We can choose to be victims or choose to be advocates.”
He thinks most people diagnosed with HIV fear being viewed as a social outcast or rejection by family or peers. There is also the fear of job discrimination or outright physical violence, he says. “I’ve been fortunate and blessed, but it’s still a conscious reality.”
He suspects some people might still be afraid of AIDS on a very deep level, but he asks all to have a broader mind and a more open heart.
“We’re all human. You never know if it could happen to you,” he says. “It’s not about passing judgment; it’s about being a bit more compassionate.”
John’s family, who has been supportive of his lifestyle for decades, does not know he is HIV-positive. He makes a careful decision on a daily basis about who he is going to tell about his disease and why he needs to tell them.
“It’s not debilitating and I don’t want to burden those I love with something they can do nothing about,” he says. “And for the most part, I’m healthy and happy.”
He voices concern for younger generations and warns against the “it won’t happen to me” attitude.
“Once the cards have been laid, you can’t pick them up and reshuffle,” he says. “You play the hand you’re dealt and you play to win.”

*Name has been changed by request.

Trail To A Cure: Riding To The Rescue

About a year and a half ago, a group of people with a common interest met to discuss their next step. How could they get their cause known? The owner of a local café came up with the idea of a fundraiser in the form of a bike ride. The group dove in headfirst and made it happen.
These men and women share the drive to find a cure for HIV/AIDS. They started meeting in May 2007, and by the following year had hosted a trial ride/walk/run fundraiser on the Katy Trail that raised more than $12,000. The funds – 100 percent – from the May 4 event in Rocheport were donated to RAIN of Central Missouri and amFAR, the American Foundation for AIDS Research.
Executive Director Liz Rettke says, “in talking about forming the organization, I just started saying to people, ‘I do it in memory of those I’ve lost, in honor of the many friends I know who are living with it and in hope of finding a cure.’?”
During the 1980s, Rettke lost many friends to the disease. Her passion in spreading HIV/AIDS awareness is fueled by lost loved ones and by her four children.
“It scares me that they are at risk for things that I wasn’t when I was their age,” she says.
The group plans to hold the bike/run/walk annually to raise funds and awareness for HIV/AIDS. Next year’s event is scheduled for May 3, 2009. In addition to this main fundraiser event, Trail To A Cure also sponsors Feast to Fight AIDS, usually on the first Wednesday of the month. When individuals dine at participating restaurants, a percentage of their bill goes to Trail To A Cure. Feast to Fight AIDS eateries have included Les Bourgeois, Teller’s, Addison’s, Sophia’s and Jazz.
Joe Jerek, an active member in the organization, says it is really impressive to “see the birth of an idea grow into an event that cleared $12,000 in its first year” and “that gets more than 140 people participating in it – it’s a lot of dedication and community coming together.”
The group’s mission is to provide and increase volunteerism within the community, awareness and knowledge of HIV/AIDS, and its prevention and funding for research and services.
Rettke is very proud of the group’s beneficiaries, RAIN and amFAR. “I think it’s fair to say that everyone on the board knows someone who is receiving those services from RAIN and so it makes us feel really good about the efforts we’re putting into it; we’re seeing that in the lives of the people we care about.”
The research group amFAR is one of the world’s leading nonprofit organizations dedicated to the support of HIV/AIDS research, HIV prevention, treatment education and the advocacy of AIDS-related public policy. The organization has invested almost $275 million in support of its mission and funded grants to more than 2,000 research groups all over the world.
Jerek says raising funds to go to organizations such as amFAR is vital because “while they are global in nature, those funds trickle back into our community.”
Rettke says she feels good about supporting amFAR.
“Not only do they provide research,” she says, “they lobby our government to keep dollars there to find a cure.”

For more information visit www.aidstrailtoacure.org, www.amfar.org, www.missourirain.org.

Medical Marvels:Offering Hope For The Living

Although Dr. Brian Johnson has not seen an increase of HIV cases in his office, he knows it is on the increase nationwide, especially in the 13 to 24 age bracket. In that age group, there has been a 42 percent increase between 2000 and 2005, he says.
Johnson, an infectious disease physician at Boone Hospital Center, says he generally sees patients 35 to 44 years old, an age group that still makes up the largest group of people living with HIV/AIDS. The increase in diagnoses comes from better treatment and expanded access to health care, but also because “we are more aggressive in our screening,” says Johnson.
Doctors are considering HIV more because of the nationwide increase in incidence and more frequent testing opportunities. For example, blood donations are checked for the virus at blood drives.
“We’re trying to screen everybody we see,” Johnson says. That includes new patients that come to his office establish primary care. He also asks for detailed sexual history and habits.
“We’re trying to get every physician to screen everyone for HIV,” he says. “If we offer screening to everybody, we catch people who don’t have the faintest idea” that they are HIV-positive; as many as 1 in 5 people don’t know they are infected, he says.
Johnson believes public education can help slow and potentially stop the spread of the virus, especially to the middle-aged population that don’t necessarily think it needs sex education. People in their 50s and 60s having sex but not thinking about the consequences are at risk, he says. He uses the example of older, divorced people who aren’t worried about pregnancy since their age precludes that possibility. Freedom from pregnancy worries makes many forget about precautions that can also prevent an STD or HIV.
“I think that in my clinical experience, what happens is people throw caution to the wind,” Johnson says. Those who have been cautious or abstinent for a great deal of their lives finally just let their guard down or act on impulse.
“You’re at risk if you don’t practice safe sex,” Johnson says. The virus “doesn’t drift in through the window; you have to get it from somewhere.”
He has seen HIV cases in men who have had an extramarital affair while out of town on business or men who have experimented sexually with other men and not taken precautions.
“They ignored the warnings,” he says and didn’t think it would happen to them.
His patient’s reactions to being diagnosed with HIV vary. It makes some very sad because they are reminded of their disease daily by the medicine they take. Others say their diagnosis “woke them up” and helped them realize what they were missing in life.
Johnson says almost all newly diagnosed patients come to him thinking they have a fatal illness and their life is over. He explains to them that an HIV infection s no longer the death sentence it once was. Patients can still have relationships and hold and kiss their children.
“To give them hope and their life back is really what it’s all about,” Johnson says.
Many, though, are still very frightened and worried about their illness and the reaction others might have to it. Individuals in smaller towns often won’t see their local medical staff because they don’t want their virus to be known. Their life changes when they come to Columbia for treatment, even though it may be an hour away, Johnson explains.
HIV-positive individuals usually start antiretroviral therapy, which is the medication that suppresses the virus, allowing the immune system to repair itself. He compares the treatment to someone who takes medication to control blood pressure.
“The single most important thing is that the patients take their medications as instated and not miss any doses,” Johnson says.
He goes over the treatment program very carefully with his patients and explains each side effect that can occur with the various drugs. The combinations of medications are commonly called a “cocktail” with three to four different drugs combined into one pill. Johnson says it is vital that patients follow the treatment laid out for them because missed doses can cause the virus to become resistant to the medication and lead to serious infections.

The Diseases That Threaten Missourians

Heart Disease

According to the Missouri Department of Health and Senior Services, heart disease accounts for more than 15,000 deaths each year in Missouri. It is the leading cause of death in the state.
Missouri ranked 9th out of 50 states in heart disease prevalence in 2005 according to an April 2008 report by the Missouri Department of Health and Senior Services.
Missouri’s heart disease death rate is 596 per 100,000 people. The national death rate is 536 per 100,000, reports the U.S. Centers for Disease Control and Prevention.
Boone County falls in the lowest category of heart disease death rate: 476-535 per 100,000, according to the CDC.
Almost 700,000 people die of heart disease in the United States each year. That is about 29 percent of all U.S. deaths, reports the CDC.

Cancer

According to the CDC, 108,355 men and 87,897 women were diagnosed with lung cancer and 89,575 men and 68,431 women died from lung cancer in the United States, in 2004. Death from lung cancer has decreased significantly by 1 percent each year from 1995 to 2004 for men and women combined.
The American Cancer Society estimates that 1,437,180 cases of cancer will be reported in the U.S. in 2008. About 565,650 Americans are expected to die from cancer in 2008.
Missouri is expected to have 29,390 new cases of cancer in 2008, including 3,810 cases of breast cancer and 5,560 cases of lung and bronchus cancer, according to the American Cancer Society. The group reports that 12,630 Missourians are expected to die from cancer in 2008.

Diabetes

The Missouri Department of Health and Senior Services reports that in 2005, nearly 337,000 Missourians reported they had diabetes, up from 313,000 Missourians who reported the disease in 2004.
A 2005 report by the CDC says that in Boone County, 6.2 percent of adults age 20 and older have been diagnosed with diabetes. A CDC report last year estimates that 17.9 million Americans have been diagnosed with diabetes; another 5.7 million are estimated to be undiagnosed.

HIV/AIDS

In 2006, there were 657 cases of HIV/AIDS diagnosed in mid-Missouri, with nearly half of them in Boone County. Since the first cases were reported in the area in 1984, more than 200 mid-Missourians have died from AIDS. Over the past decade, the number of reported cases has steadily increased; in the last five years, it has gone up by more than 25 percent, according to the Missouri Department of Health and Senior Services.

Statistics

Approximately 30 percent of men who have sex with men claim that they also engage in sex with women, according to the Missouri Department of Health and Senior Services.

In the past two decades, the number of women living with HIV has tripled so that 1 in 4 Americans with HIV are female, according to the CDC.

The CDC reports that nearly half of all individuals newly diagnosed with HIV are black.

The CDC reports that 1 in 4 Americans infected with HIV does not know his or her status.