A total of eight states — Iowa, Nebraska, Wyoming, South Dakota, Kentucky, Montana, Indiana and Arkansas —  now have waiting lists associated with the AIDS Drug Assistance Program, a specific funding stream within Ryan White Part B that provides medications to individuals infected with HIV or who have AIDS. The federal dollars, which come to the state as grants, can be disbursed according to guidelines set by the state. In Iowa and Nebraska eligible persons must have an income that does not exceed 200 percent of the current Federal Poverty Income Guidelines. In addition, Iowa includes a $500 work deduction from the monthly gross salary of those employed.

Although it isn’t the first time states have had to institute waiting lists for participation in the program, this does mark the first time such waiting lists have been instituted without a clear path to additional funding to provide the needed funds. In 2004 and 2005, more than 100 Iowans were placed on a waiting list. That backlog was cleared only when the Iowa state government stepped forward and provided its own funding to the ADAP program, something it has continued to do since that time.

“With our current system the way it is, if the program doesn’t constantly receive increases in funding, we’re always going to run into this problem,” said Holly Hanson, Ryan White Part B program manager for the Iowa Department of Public Health. “Flat funding will never work for us because the medications are good and people are living longer with this disease — which is a good thing — but diagnosis [of new cases] remains steady.”

In short, funding has mostly remained at a consistent level since the 2005 increases due to state appropriations, but the numbers of people seeking assistance has continued to climb. Iowa has roughly 100 new individuals diagnosed as HIV positive each year. Nebraska diagnoses roughly 40 per year. For each individual receiving assistance, the states estimate they spend between $8,000 to $10,000 a year.

“The current economic situation is definitely a part of it,” said Steve Jackson, program manager for the Nebraska Department of Health and Human Services. “We are seeing individuals who are requesting — outside of ADAP — assistance with COBRA premiums. That’s an entirely different category. It does, however, impact the ADAP if those individuals don’t have good drug coverage on their COBRA fund. They can then request assistance through ADAP. We are seeing about a 10 percent increase in the number of individuals who come into the program each year, and our funding is just not keeping pace with that.”

Hanson added that the programs have also seen an increase in pharmaceutical costs, but that cost is far overshadowed by Iowa’s dramatic increase in program utilization.

“We are basically the safety net,” she explained. “And all of the clients are required to work with a case manager, and we are working with all of those on the waiting lists to ensure that they continue to have access to the medications they need.”

Both Iowa and Nebraska have been able to work with patient assistance programs within the various pharmaceutical companies so that all of the people currently on waiting lists are not being deprived of critical, life-saving medications. Nebraska has also been able to establish collaborative programs with other agencies within the medical community that can serve as a stop-gap measure while the waiting lists exist.

“The problem is that many of the people living with HIV are on highly active retroviral treatments, which means that they are taking several medications that are often from different pharmaceutical companies,” Hanson said. “With each medicine, the person needs to apply with the appropriate pharmaceutical company for patient assistance. Each program could have different deadlines and different renewal times — making the entire process much more labor intensive for both the patient and the case workers.”

Although HIV, the virus that can result in AIDS, was considered a terminal disease only a decade ago, it is now considered a serious, but chronic condition by most medical professionals. Medications, especially the retrovirals, are key to keeping the disease under control, and they require an extremely high adherence rate. If doses are missed or if medication is stopped, the virus could become resistant to the pharmaceutical regiment and the patient becomes much less likely to fight off infection.

Iowa receives roughly $1.7 million in federal funds that is earmarked specifically for ADAP, including a supplemental grant. Although the state had been contributing $550,000 to the program, that appropriation was cut this year by $28,000 to $525,000.  Nebraska receives roughly $2.5 million in federal funding, and $900,000 from the state.

The Ryan White Act is the primary vehicle used by the federal government to send money to the states for HIV/AIDS prevention, education and care. Within the program, formulas have been created that provide greater assistance to areas who have historically had a higher incidence of diagnosis. Those formulas are at least partly to blame for why Midwestern states are coming up short in assistance dollars, according to Brandon M. Macsata, chief executive officer of the ADAP Advocacy Association.

“HIV/AIDS is no longer a disease that primarily strikes gay men in big cities,” he said. “In fact, communities of color and women are disproportionately impacted by the disease, especially in rural communities. Our organization contends that the money should follow the disease, and that is not happening — which is why you see waiting lists in middle America and not in states like New York and California.”

His organization has joined with others who have asked Congress to continue with the reauthorization of the program for a few more years, so that a better determination can be made on how it is working and what changes might need to be made. He also advocates that that ADAP funding throughout the nation needs to be increased by $230 million, just to keep pace with the demand.

For now the state programs will continue to seek assistance for those in need as best they can.

“I think we will be OK through March 31, when the Ryan White fiscal year ends,” said Hanson. “But I’m really worried that if we receive flat-funding from the feds and the state… I don’t know that we could get through our next Ryan White grant cycle with even just the people we currently have enrolled. I guess we need to… well… we either need to come up with a new national health care plan or increase funding.”

The existing authorization for Ryan White funding — named for the Indiana teenager who became an international symbol of HIV/AIDS in the late 1980s as he fought to attend school after he was diagnosed with HIV — is scheduled to sunset on Wednesday. That is, barring no action from Congress, no more appropriations past the March 31 end of this fiscal year would be made.

A spokeswoman in U.S. Sen. Tom Harkin’s office confirmed to The Iowa Independent that Congress will not meet the deadline, but plans to issue a 30-day temporary extension so that mark-ups and drafts of a new bill can be created and passed by the end of October.

Although this reauthorization gives Congress an opportunity to look at ADAP and other funding formulas within Ryan White, passage of a new bill will likely not impact the existing shortages within the states.

Fairfield resident Mary LaFrancis walks behind the line of individuals defending Dr. LeRoy Carhart's abortion clinic in Bellevue, Neb. Despite her attempts to speak with those on the line and show them an ultrasound picture, she is ignored except for chants of "Welcome. Welcome. This clinic stays open."

“The drive is nothing when you consider the importance of defending Dr. Carhart, this clinic and the women who had scheduled appointments here,” said Des Moines resident David Rosenfeld, 46, who abandoned his local city council campaign for the weekend to come to Bellevue. “I didn’t even think about [the drive]. I just knew I had to be here.”

According to Lt. Chuck Clark of the Bellevue Police Department, those who came to defend the clinic from a protest initially announced by Kansas-based Operation Rescue substantially outnumbered protesters throughout the scheduled two-day event.

“Both sides — the anti-abortion protesters and the pro-choice demonstrators — started about 7:30 [Saturday] morning or so, and probably their numbers peaked between 8 and 10 a.m. At that time there were probably about 150 of the pro-choice people and there were about 50 of the anti-abortion protesters. There were more here throughout the day, as people came and went, but at those peak times the ratio was about three-to-one,” Clark said.

The ratio of Iowans who traveled to Nebraska to be part of the demonstrations was even more lop-sided. Of the roughly 20 Iowans who participated, only one was there to protest the clinic.

Mary LaFrancis, a retired nurse who lives in Fairfield, had been making the 7-hour drive into Wichita, Kan., to protest Tiller’s clinic before the doctor was gunned down in the foyer of his own church.

“Women come from all over for late-term abortions because they are sold lies in their vulnerability and desperation. Just as they explained to me at the clinic, the circumstances make the choice… That’s why I’m here,” said LaFrancis, who was previously arrested during protests at the University of Notre Dame.

LaFrancis, who became an activist following the Terri Schiavo controversy, said that “man proposes and God disposes.”

“Each one of these people should be in that abortion room and see what they are doing and hold that woman’s hand. And, hopefully, some day they will see it differently,” she said. “When we come to understand that the unborn child is a person, a person from the very first cell, and how would — I mean — they should have done this thing to our president. You know? What if their mothers would have done this thing to them? Would they see it differently?”

Des Moines resident David Rosenfeld and ISU graduate student Kendra Malone were among more than 150 individuals from 17 states who traveled to Bellevue, Neb. to defend Dr. LeRoy Carhart and his clinic.

LaFrancis believes that abortion under any circumstance is murder and, she said, that belief justifies her urgency. In Bellevue, she walked behind a line of people defending the clinic with an ultrasound photo that she described as “the truth.” She attempted to show those in the line the photo, which Operation Rescue officials claim was taken that morning of a woman who changed her mind about having an abortion. LaFrancis, like all the protesters who crossed the street in hopes of communicating directly with clinic defenders, was ignored except for a nearly continuous chant, “Welcome. Welcome. This clinic stays open.” Unlike Troy Newman, president of Operation Rescue, and another protester who refused to identify herself, LaFrancis simply moved back to the other side of the street and didn’t laugh or offer comment to the chant.

Cheryl Sullenger, a senior executive with Operation Rescue who was made infamous by a two-year federal prison sentence in connection with an attempted California clinic bombing and by her name and phone number being on the dashboard of the man charged with murdering Tiller, also walked around the clinic attempting to distribute the ultrasound photo. Sullenger said that the woman wasn’t aware that there would be demonstrators when she made the appointment, and that “pro-abortion people were calling her name over a bullhorn, and that upset her.” The Iowa Independent was on the site well before the woman allegedly arrived on Saturday morning, however, and those affiliated with the clinic or defending the clinic were not seen using or carrying bullhorns.

Despite attempts by The Iowa Independent to make direct contact with the woman who anti-abortion organizers said provided written consent for her ultrasound photo to be used, an interview could not be arranged and the woman’s name was not provided. It remains unclear if the woman was truly an individual who, when presented with an ultrasound, chose to remain pregnant, or if she was party to a publicity stunt meant to bolster the protesters’ meager presence at the clinic.

Clinic officials, who would not say if any patients had missed scheduled appointments that morning, did reveal that at least one woman who had come to the clinic for an abortion turned out not to be pregnant. Whether the woman was simply misinformed about her condition, or if she knowingly scheduled an appointment for an unneeded procedure also remains unclear.

Whatever women’s reasons for entering the clinic on Saturday, Kendra Malone, an Iowa State University graduate student, said she was happy to be there for them.

“We are here to support them, to let them go about their business and so that they can get the care they need,” she said. “We wanted to show them that there are people out in the community that support them and the decisions that they have every right to make.”

Jean Classon, president of Iowa NOW, stands near the intersection of Mission and Lincoln in Bellevue, Neb. to show support for women's rights.

Des Moines resident Jean Classon, president of the Iowa chapter of the National Organization for Women, said those who support a woman’s right to choose abortion are also not the people who are drawing attention to women who make that choice.

“This is what NOW is all about — defending women’s rights. The most basic of those rights is to have an abortion and to have it be safe and legal. I couldn’t imagine not participating in some way,” she said. “But our side of the debate isn’t usually the side that starts these things. It doesn’t make sense to stand outside of clinics if there is nothing to defend against.”

Classon, who helped defend Planned Parenthood clinics in Des Moines from local anti-abortion activist Dave Leach, said that maybe Iowans have become accustomed to the state’s progressive tendencies and are a bit complacent in the battle for women’s rights.

“We need health care reform so badly, and they are trying to tack on all these things to ensure that women are not included in this reform effort,” she said. “It irks me to think that we’ve been fighting this fight for 35 years and it is still going on, and it still seems to be in the same place. I think that people that have grown up since this started — when the Roe v. Wade decision came down — I think that there is maybe a whole generation of people who think that it is a given right and that there is nothing that could ever stop it from being that way. Unfortunately, it could happen — and very easily.”

Malone and Rosenfeld agree, insisting that there can be no compromise or common ground found between those who believe a woman should have ultimate control of her own health decisions and those who believe women should not.

“The government should have nothing to do with what happens between an individual and his/her health care provider — be that abortion, reproductive health services or any aspect of physical and mental health,” Malone said. “There is no compromise because if you draw one little line you can constantly be taking way and backing up until we have nothing again.”

Rosenfeld, who was raised by parents who were active in the women’s and civil rights movements, views the very concept of common ground as dangerous.

“This is something that President Obama has raised and that others have raised and I think it emboldens [opponents of women's rights]. The key thing is why abortion should be treated differently than other medical procedures that you could get benefits for or financial aid for. It is one of the many erosions of this right since it was won. So, the question isn’t about where to find common ground, but how to ensure that this is a right that all women have access to,” he said.

While this battle is a win for the clinic defenders — in terms of both numbers on the ground and contributions raised through the pledge-a-picket program, activists on both sides of the issue understand that the war is far from over.

This map shows the various age limits the states have written into their "safe haven" laws. Prior to the July enactment of a vaguely written Nebraska law, New Mexico had the largest window. In that state children up to 3 months of age could be delivered, few questioned asked, to hospitals or other designated facilities. (Map created by Nebraska Dept. of Health and Human Services, Geographic Information Systems.)

The state of Nebraska faces a situation most parents can’t comprehend. At last count 34 children, ranging in age from 20 months to 17 years, have been left at Nebraska hospitals under the auspices of a vaguely written “Safe Haven” law.

The Nebraska law, which was signed in February and became effective in July, was to be the last, given that all other states had already enacted similar legislation. During debate, however, Nebraska lawmakers took a unique slant. Instead of attaching an age to the law — ages that some lawmakers deemed “arbitrary” — the legislators opted to write the law so that any “child” could be handed over to the state at designated drop-off points, such as hospitals, without any legal recourse against the child’s guardian.

As a result, parents have driven several hundred miles — from as far away as Miami-Dade County in Florida and Pima County in Arizona — in order to leave their children with state officials in Nebraska.

The children left in Nebraska come from various socio-economic and ethnic backgrounds. Twenty-two are considered white, 11 are considered black and one is Native American. Twenty of the 34 children are between the ages of 13 and 17.

They have three things in common.

1) Thirty-two of the children resided in or near an urban area.

2) Thirty of the children were living in a single-parent home.

3) Thirty of the children had previously received mental health services, with 11 of those receiving treatment above an outpatient level.

This last statistic does not surprise George Estle, executive director of Tanager Place, a private nonprofit organization in Cedar Rapids that provides services to children and families experiencing social and psychological needs.

“If we would have had this same law in Iowa, the same thing would have happened here,” Estle said. “I suspect that if we really look at the kids who are being dropped off in Nebraska — particularly the adolescents — many of those will be young people who have serious emotional problems. My hunch is that parents are utterly frustrated at not being able to access services. So, they are using that law as an act of desperation because they can’t get services.”

Such was definitely the case for former Iowa resident Carrisa Gatley, a single parent who has an 11-year-old son with severe mental disabilities. She hasn’t left her kid in Nebraska but she admits she could imagine it.

“Shortly after [our son] turned 3, my husband left,” Gatley said in a telephone interview Wednesday. “I didn’t blame him. I actually envied him — that he could escape the hell that came with trying to deal with everything.”

Gatley said it wasn’t just her son’s violent episodes, which have become increasingly dangerous as he’s grown older, but the constant and often depressing task of fighting with the insurance company, medication changes, food restrictions and trying to locate service providers.

“We left Iowa about six years ago because there were no doctors available in our area,” she said. “Now we live in an urban area where services aren’t plentiful, but adequate. At least I know that when there is a really bad day, I’ll have someone to turn to — someone who helps us through the rough spots. Without that support, I might very well have also made the drive into Nebraska.”

Estle, who does not know the Gatley family, said he can understand the frustrations of parents who live with children afflicted with mental illness. He said he sees parents every day who are frustrated and desperate to find help for their children.

And that frustration doesn’t end with parents. Care providers — the few that remain — have difficulty placing the children who graduate from acute-care facilities, such as the handful available in hospital psychiatric wards or in the Tanager Place long-term care program.

“Years ago, when the state of Iowa decided to carve out the mental health care portion of Medicaid, they gave it to a for-profit-based care company,” Estle explained. “What happened immediately after that was the reduction of the number of acute-care beds available. So, what you saw was a very rapid decline in the hospital-based beds for kids in the state.”

Estle said that while such changes have resulted in fewer psychiatric beds for patients of all ages, the cuts in the number of psychiatric beds for children has been most severe.

“Those [programs] that are left struggle,” he said. “For example, St. Luke’s Hospital in Cedar Rapids has inpatient beds for children, but they often struggle with kids they can’t move to another level of care because those needed services don’t exist.”

When that happens, the children often leave the hospital in their parents’ care — whether or not the parents are in a position or have the resources to continue the child’s treatment.

“It’s the same problem we have with our long-term psychiatric medical institution,” Estle said. “We can treat kids, but then we need to be able to move them to lesser levels of care. Those lesser levels of care really just aren’t available. Because of this the whole system gets kind of jammed up, if you will.”

Parents who hope their children will have access to outpatient services once they’ve left an acute-care facility may find that such services are limited, if available at all.

“For those who live in Cedar Rapids, we have a full-time child psychiatrist on staff here at Tanager Place to do outpatient care,” said Estle. “I think one of the private psychiatric groups has a couple as well. But that’s it. If you want a child psychiatrist, those are the only ones available. Across the entire state, there are only a handful of child psychiatrists available. It’s just a real problem of shortage of services and shortages of professionals.”

Iowa isn’t the only state that is coming up short when dealing with mental health issues for children, according to Estle.

“I really do think that what has happened in Nebraska is symptomatic of a bigger problem,” he says. “It’s a problem that we have in Iowa and a problem that is in many other areas of the country. If you look at what is available to those suffering with mental illness in our state, it basically comes down to some traditional outpatient care that varies sporadically across the state. There are a few inpatient and acute-care beds left, but not many. There are far fewer than there used to be. There are some programs like Tanager across the state, but that’s about it. There’s nothing else out there.”

The situation is especially dire in the Midwest, where the population is less dense and there are fewer opportunities both for care and for training.

“In the state of Iowa you have one residency program available at the University of Iowa. That’s it. One program with limited slots,” Estle said. “And then, quite frankly, the reimbursement in Iowa for those professionals is really low. So there is really no incentive for those folks to stay here or come here.”

Although the state Legislature has acknowledged Iowa has a crisis in relation to the availability of psychiatrists and psychologists, Estle isn’t seeing much movement at a state level to correct the system’s deficiencies. The reimbursement given to the Tanager Place psychiatric medical institution for children — a total of $167 a day — is the lowest in the nation.

Estle does believe the mental health system in Iowa can be fixed, but it will take actions by a state Legislature that has previously been unwilling to act and now has the added pressures of flood recovery and budget shortfalls.

“We’ve not done much in the state to develop a good system of care for kids with mental illness,” he said. “I think that’s what we have to do first. We have to design and fund a good system of care in Iowa, and we’ve got to figure out a way to attract professionals to staff it.”

U.S. Sen. Ben Nelson, D-Neb., was at the Iowa State Fair on Friday speaking in support of Democratic presidential candidate Barack Obama.

Voters concerned about federal agriculture policies will gravitate toward Barack Obama, said Nebraska senator Ben Nelson at the Iowa State Fair Thursday.

In an interview with the Iowa Independent Thursday afternoon, Nelson said that there are many important differences in the two major presidential candidates on farm policy.

The key difference, said Nelson, is on biofuels.

“Senator Obama supports corn-based ethanol and moving to other bio-based ethanol products as well,” Nelson said. Senator John McCain, R-Ariz., “has fought against, and does not support corn-based ethanol and has resisted it and voted against it.”

The Nebraska Democrat, who serves on the Senate Committee on Agriculture, Nutrition and Forestry, played an important role in crafting the new farm bill that was passed into law earlier this year. He worked alongside Iowa’s senators, Democrat Tom Harkin and Republican Chuck Grassley, to bring the bill out of committee and ultimately to passage through an override of a veto by President Bush.

“Senator Obama comes from a state that’s rich in agriculture — Illinois,” said Nelson. “He understands agriculture and is willing to work with farmers and ranchers to find better ways. And he supported the farm bill.”

McCain, said Nelson, voted against the farm bill and is “still opposed to the farm bill and to any kind of government support for ethanol.”

He said voters in Iowa and in Nebraska who are concerned about agriculture will have a clear decision. “It’s a matter of what people decide to support, and what their agenda is, that will cause voters to decide who to vote for. Either in favor of the farm bill, in favor of supporting agriculture — or in favor of the positions of Senator Obama’s opponent, which in my opinion certainly should not be attractive to Nebraskans or Iowans or anybody in agriculture.”

Nelson went on to speak in support of Obama at the Des Moines Register building, where he discussed how he believes Obama’s health care proposals will benefit rural areas.

Denise Withee, 46 of Mapleton, had been undergoing mental evaluations, according to the Grand Island Independent. She now faces three felony counts of animal neglect resulting in death and is expected to be arraigned Tuesday morning.

The dogs, all from various small breeds, are suspected of dying from dehydration and heat exhaustion, although additional tests are being completed. In addition to the dogs that died, Withee had 13 living animals in her possession at the time of her arrest on Aug. 2.

Withee faces similar charges in Monona County, her place of residence in Iowa. She is being charged for 20 dogs that were found running at large and 27 more dogs found in two separate residences. According to CBS news, the residence in Mapleton has been marked as a bio-hazard due to the amount of animal feces and urine. The Iowa charges of animal abandonment and neglect, which may increase as more is learned about the case, are misdemeanors.