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Issue #219: March 5, 1999
fastfax is available by fax in the 215 and 610 area codes at no cost, or by mail anywhere for $20.00 per year, by calling 215-545-6868, and by E-mail by contacting and type the message SUBSCRIBE in the message section. Sources for some articles in this issue include Kaisers Daily HIV/AIDS Report, Las Vegas Sun, Journal of the National Medical Association, Philadelphia Inquirer, Reuters.
In This Issue:
Editorial: Too sick to be on their own
Druggists sue DPW over HealthChoices rates
AIDS in black community is focus of national conference
Another study confirms higher HIV risk for black gays
FDA approves trials for drug that withstands resistance
Emergency fund maximum increases
Elayne Jones, former WTP board members, dies at 53
Nevada bill would allow police to order HIV testing
WTP seeks board members
Editorial: Too sick to be on their own
by Rob Capone, Executive Director, We The People Living with AIDS/HIV
We have a serious problem.
It's not a new problem, but because of the partial success of the medications over the past couple of years and the national attention given to remarkable recoveries, we have missed a gap in services that desperately needs to be addressed.
I'm talking about intermediate care for people who have AIDS. Intermediate care was once a Medicaid reimbursable level of care designed to meet the needs of people who were no longer sick enough to qualify for skilled nursing care but still not healthy enough to live independently, or at home with a visiting nurse.
Thanks to over a decade of Medicaid cutbacks and the invention of managed healthcare, and the efforts of state and federal officials who consistently reduce the dollar value of human life, an entire portion of the healthcare system for the most vulnerable members of society, particularly persons living with AIDS, has been abandoned.
Somewhere along the line state and federal officials decided that it was far too costly to cover the care for people who fell through the cracks between "skilled care" and "personal care." At the same time, Pennsylvania officials made a decision that they were not going to increase the number of skilled nursing beds in the state, opting instead to force poor people to manage with home health services even though they may need more intensive care.
This situation is what led to the eventual closing of Betak, Corpus Christi Home in Pittsburgh, and other facilities that were trying to take care of the people with AIDS who are most vulnerable. Now places like Girard Medical Centers' skilled nursing facility have been forced to lose hundreds of thousands of dollars trying to care for people who are not sick enough to be reimbursed for, but who can't be discharged because they have no place else to go.
With all the talk of providing care to people living with AIDS along a "continuum," it seems we have forgotten one of the most important stages along that continuum. One that has resulted in people with AIDS dying alone, with great pain and suffering, much sooner than they would have if we'd only been willing to sacrifice a little more.
We The People has stood by a lot of people with AIDS over the years, in all places and conditions of life. But we've never fought harder for any one of us than we have for those who are in pain only because the AIDS system couldn't find enough money to care for them.
So what can we do to fix this crisis?
We need to advocate for the creation of a facility designed to meet this unmet need. Or we need to expand services at places like Calcutta House or Good Shepherd House. Or we need to help places like Keystone Hospice convert some of the hospice beds to personal care beds.
For those who would ask where do we get the money to do this, we can only remind you that the publicly-funded AIDS "continuum" has more than $25 million at its disposal, and that doesn't even count the amount of money that Medicaid, Medicare and private insurance companies pay for AIDS care.
Maybe it's time that all the bickering among AIDS service organizations (and yes, we know we do it too) quiet down just long enough for us to listen to some of those people who are too sick to come to all our meetings and too much in pain to fight hard for their own survival.
We need to lobby the Office of Housing and Community Development to use HOPWA (Housing Opportunities for People with AIDS) funding to pay for a building if we decide that we need to start from scratch.
We need to press the city to set aside some of the millions of dollars it's made in profits through its behavioral health managed care program so that these people with AIDS can live. We already know that the city has dedicated millions of those "reinvestment" funds to moving homeless people off the streets of center city - why not use some of the money to keep us from having to die there?
We need to explain the situation to the HIV Commission and the Philadelphia AIDS Consortium and get them to recommend that we utilize some of this year's Ryan White dollars to pay for this level of care. Remember, the "CARE" in the Ryan White CARE Act stands for "Comprehensive AIDS Resources Emergency" - and what's more of an AIDS emergency than a desperately ill person with AIDS having no place to get well, or no place to die?
We The People Living with AIDS/HIV think that those of us who are this desperate deserve to have somebody pay attention. We think that maybe, just maybe, we need to sacrifice something else to make sure that our most vulnerable brothers and sisters keep their right to life.
We also need to begin educating the state and the Commission and TPAC and OHCD and anyone else with the ability to help that they must not let this serious gap in services for people living with AIDS to continue. We The People led a hunger strike a few years back in order to keep Betak open for an extra year or so in order to fix this problem once, but it didn't happen.
The great plans devised to do that have somehow fallen through the cracks. Well, thanks to ACT-UP, we are again aware of the problem.
And We The People is renewing it's commitment to help fix this once and for all.
Druggists sue DPW over HealthChoices rates
Sixteen Philadelphia pharmacies and the Pennsylvania Pharmacists Association have filed a series of lawsuits in state and federal courts alleging that the state's Medicaid managed care program, HealthChoices, is forcing them out of business because of low reimbursement rates.
Almost half of the independent pharmacies in southeastern Pennsylvania have gone out of business since HealthChoices was implemented almost two years ago. Many people with HIV/AIDS and other disabling illnesses have charged that they are unable to get their medications because many pharmacies will no longer accept HealthChoices prescriptions; two of the three major pharmacy chains in the area, Eckerd Drugs and CVS, have mostly pulled out of the HealthChoices program.
Some pharmacists have also charged that the state is conspiring with Rite Aid, the only major pharmacy chain still participating in HealthChoices, to force them out of business. Rite Aid owns Eagle Managed Care, which runs the HealthChoices prescription program for three of the four Medicaid HMO, and recently bought PCS, which manages the prescription plan for the fourth HMO.
In the lawsuits, the pharmacists claim that by allowing pharmacies to be underpaid for HealthChoices prescriptions, the state Department of Public Welfare has violated federal law. The suits were filed in January, and were reported in the Philadelphia Inquirer on February 28th.
The pharmacists claim that independent pharmacies have lost over $93 million since the HealthChoices program began.
State officials have claimed in court papers that the pharmacies were well aware of the HealthChoices reimbursement rates when they signed up with the HealthChoices HMOs, which serve 460,000 poor people in the five counties of southeastern Pennsylvania. The state also said that while it sets the amounts of money awarded in total to each HMO, it has no specific role in setting individual drug reimbursement rates and that those rates are negotiated between the HMOs and the pharmacies.
Meanwhile, the HMOs have all said that the reason their drug reimbursement rates are so low is because DPW doesn't give them enough money to pay more.
Under managed care, the state provides a set amount of funding to each HMO each year and the HMO must meet all its expenses within that amount, regardless of whether it will make or lose money. Many have claimed that applying managed care principles to health care for the poor, along with declining Medicaid cuts generally, gives, in effect, an incentive to the HMOs to deny care or provide lower quality care in order to make ends meet.
R. Christopher Raphaely, a lawyer for the pharmacists, told the Inquirer that the state is ultimately responsible for putting the independent pharmacies out of business.
"Our position is that they still have obligations that they must meet" under federal law.
Ron Hyman, owner of Esterson Drug in the city's Fishtown section, told the Inquirer that he recently filled for HIV-related prescriptions at his store that cost him about $3,000. "When I figured out the whole thing, I made about $2 [on the sale]. Would anybody else in their right mind lay out $3,000, wait a month, and then get $3,002 back? I could put that $3,000 in the bank at 2 percent and make more money."
AIDS in black community is focus of national conference
The frequency of reported AIDS cases is six times greater among African Americans than it is among Caucasians, Dr. John G. Bartlett of Johns Hopkins University School of Medicine said this week as the issue was addressed last week by prominent AIDS clinicians, public health experts and government officials at the inaugural1999 National Conference on African-Americans and AIDS held in Washington, DC.
AIDS is the leading cause of death among African Americans between the ages of 25 and 44 years old, and while total AIDS deaths in the US declined by 47% in 1997, the decline was only 13% among African Americans.
The problem is confounded by two other complications, injection drug use and poverty, Dr. Bartlett explained. "What people are talking about here is the necessity for a broad scope of services because of the multiple needs of patients with HIV infection." There has also been much discussion on the problem of access to care, including the need for better care and access to clinical trials in prison.
"There's a great deal of interest in the use of new drug therapies in patients with injection use," Dr. Bartlett continued. The failure of the government to support needle exchange programs was also widely discussed at the conference. To address this issue, many conference participants plan to "use whatever political power they have, which is fairly substantial, in order to try to correct that."
One conference report presented by NIH researchers stressed a two-fold approach to improving AIDS/HIV care in the African American community, which includes targeting treatments and vaccines to these patients, and also encouraging more African American researchers to participate in studies.
The issue of poor communication between many healthcare providers and African American patients was also discussed, along with the need for more cultural sensitivity, Dr. Bartlett continued. News footage from a review of the Tuskegee experiment presented in one session highlighted this problem. It was "humbling," he said, and "set a tone that was discomforting."
Many participants were gratified by President Clinton's recent allocation of $150,000,000 to address the problem of AIDS/HIV in the African American community. But there is also a feeling that while this is a good start, it is not adequate, he added.
Secretary of Health and Human Services Donna Shalala restated the Administration's commitment to closing the gap between whites and minority groups in the area of HIV/AIDS. To this end, Secretary Shalala told conference participants that a comprehensive and inclusive strategy is required, along with an "unwavering" commitment to success.
Another study confirms higher HIV risk for black gays
African American men who have sex with men appear to be at higher risk of HIV infection compared with their white counterparts, according to investigators at the University of Wisconsin in Milwaukee.
The incidence of HIV infection among gay white men has leveled off in many parts of the US, Dr. Timothy G. Heckman and associates report. However, this has not been the case among men of color, especially among African American men who have sex with men, they report.
To better understand patterns of HIV-related risk factors, Dr. Heckman's team evaluated a group of 253 men who have sex with men, which included 79 African Americans and 174 whites. Although high rates of sexual risk behavior were seen in both African Americans and whites, the researchers also observed differences in HIV-related risk behaviors between these two racial groups.
The African Americans were "more likely to be HIV-seropositive, to report past treatment for gonorrhea and syphilis, and to have a recent unprotected sex partner known or believed to be HIV-seropositive," they report in the February issue of the Journal of the National Medical Association.
After controlling for confounding factors such as age, education and income, they found that African Americans were "less open about their sexual orientation, scored lower in HIV-risk knowledge, had more female sexual partners, and more frequently used cocaine in association with sex" compared with white men.
Based on these findings, Dr. Heckman's group concludes that primary HIV protection programs that target African American men who have sex with men are "urgently" needed. To this end, they believe that preventive strategies must be "culturally tailored to meet the needs of these men and offered in ways to successfully reach them."
FDA approves trials for drug that withstands resistance
The US Food and Drug Administration has approved a phase I/II trial of HE2000, an investigational new drug for HIV infection, according to an announcement by Hollis-Eden Pharmaceuticals, Inc.
The new drug is thought to inhibit energy-producing enzymes and proteins in host cells, which in turn blocks HIV replication by "starving" the virus, Company officials explain. The mechanism of action of HE2000 is different from those of currently available antiretroviral drugs, which directly inhibit HIV proteins. Therefore, the compound is unlikely to be susceptible to viral mutations and subsequent drug resistance.
"What's different about our approach is that this drug protects against the disease-causing agent by acting on the host cell's biochemical mechanism," Dr. James Frincke of the San Diego, California-based company commented. Results of preclinical studies indicate that HE2000 is active against various HIV strains, including wild-type and reverse transcriptase inhibitor-resistant and multiple drug-resistant strains.
"Drug resistance to currently approved therapies for AIDS continues to emerge," Dr. Thomas C. Merigan of Stanford University said. "Because of this, we need to find new drugs that offer more durable, less toxic and more affordable treatment options."
The phase I/II trial will be conducted at selected sites in Chicago, Houston and San Francisco Bay area, with treatment-experienced HIV-infected subjects, who will be monitored for up to 3 months after HE2000 dosing.
Emergency fund maximum increases
The new consolidated emergency financial assistance program for people with AIDS promises payments within three- to five-days after an application is approved - and increases the maximum an individual can get up to $1,500 per year, up from $750.
Households with three or more people can receive a maximum of up to $2,000 annually, according to the AIDS Activities Coordinating Office (AACO).
The Direct Emergency Financial Assistance Program (DEFA) consolidates over $800,000 in funding for emergency financial aid to people with HIV/AIDS awarded under Titles I and II of the Ryan White CARE Act and the Housing Opportunities for People with AIDS program. Applicants are able to request financial aid up to three times per year.
Most of the financial assistance awarded is for housing-related costs, although grants for out-of-pocket medical costs, prescriptions, food, and other emergencies are also available.
The new program will be centrally administered by Philadelphia Health Management Corporation (PHMC), which was recently awarded the role by AACO, the Philadelphia AIDS Consortium, which manages Title II funds, and the Philadelphia Office of Housing and Community Development (OHCD). Access to the program is available to low-income people living with HIV disease in the nine-county Philadelphia metropolitan area, which comprises the five southeastern Pennsylvania counties and the four southernmost counties in New Jersey.
Prior to the implementation of the new program, which took effect March 1st, emergency grants were awarded through subcontracts to AIDS service organizations throughout the region. The HIV Commission's Housing Committee several years ago recommended the centralization of the project, because many of the small AIDS service organizations charged with distributing the funds did not have an adequate cash flow to assure prompt payments in emergency situations. The Committee also found that costs for administering the program were high because most of the agencies involved had to use some of the emergency fund money to cover their overhead costs.
The DEFA program will be coordinated by former We The People executive director Curtis Osborne, who has been working at PHMC for the past year. Applications are best made through case managers or housing counselors, although PHMC will also accept applications directly from people with HIV/AIDS through TPAC's Department of Consumer Services, 1-800-679-3705.
Elayne Jones, former WTP board members, dies at 52
Elayne Jones, the first black woman to serve on the board of directors of We The People, died on February 24th at the age of 52 at Keystone Hospice in Montgomery County.
Jones served on We The People's board from 1989 to 1995. During that time she helped We The People reach out to women living with HIV/AIDS, eventually joining other women at We The People and Pam Ladds, who was then leading a women's support group at the Life Center, in forming Women with Immune Systems Disorders Organizing and Meeting (WISDOM), still the only organization of HIV+ women in the region.
She also served on the board of directors of Philadelphia FIGHT and the Philadelphia AIDS Consortium, and volunteered with the Pennsylvania AIDS Education and Training Center and other groups. As a member of We The People and WISDOM, Jones provided counseling to newly-diagnosed women at Hahnemann's Women's HIV Clinic.
Nevada bill would allow police to order HIV testing
by Art Nadler
© Las Vegas Sun
An Assembly bill designed to give police officers authority and the discretion to have people who are arrested also tested for communicable diseases has Nevada's Clark County Board of Health up in arms.
Assembly Bill 190, sponsored by Assemblyman Morse Arberry, D-Las Vegas, would mandate that an appropriate health authority be required to test individuals for HIV, hepatitis and any other communicable disease if an officer requests it.
Several members of the board Thursday expressed concerns that this might increase the number of unnecessary tests and cost the county thousands of dollars each year.
"This is a huge double-edged sword," board member Dr. Jim Christensen said. "As a physician, we have to be opposed to this because it would be unworkable. Testing would go through the ceiling."
Health district investigators estimate if only 5 percent of police officers requested the tests, that would cost the county $130,000 a year.
Christensen said the percentage would be much higher, saying every time a police officer is spit upon a request for an HIV test is made.
The board felt that the bill would mandate that the health district do testing, but failed to provide state funding. Member Erin Kenny said the bill might be more workable if it was amended to provide funding.
However, Fran Courtney, director of clinics and nursing services for the county, said a police officer in the field shouldn't have the final say on whether a person is tested. She said a medical professional should have that authority.
"The cost would be shifted to the county and then the health district," Courtney said of her other objection.
Problems arise, Kenny said, when people are placed in the Clark County Detention Center. While prisoners are tested routinely in traditional prisons, people may be in the detention center for up to a year, she said, and no tests are done.
"Aren't we going to be paying for it tenfold down the road?" Kenny asked. "We should be looking at this so we don't pay for it."
WTP Board soliciting new members
The We The People Board of Directors will host the semi-annual We The People membership meeting on Thursday, April 15, 1999, at St. Mary's Church, 1831 Bainbridge Street, beginning with dinner at 5:30 p.m.
At this meeting, members will elect several new members to the Board of Directors. Nominations are being accepted until March 31st, and women are especially encouraged to apply. To be considered for board membership, submit a resume or letter to WTP by that date, addressed to We The People, Nominations Committee, 425 South Broad Street, Philadelphia, PA 19147-1126. Fax nominations can be made to 215-545-8437.
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