published by We The People Living with AIDS/HIV of the Delaware Valley, Inc.
Law Project study confirms Medicaid HMO concerns
What's Wrong with HealthChoices? An ACT UP Statement
Course of HIV infection can be predicted
Roche adds confusion to free viral tests
Fleming out, Shalala stays for second term
Law Project study confirms Medicaid HMO concerns
A small study conducted by staff of the AIDS Law Project of Pennsylvania has confirmed anecdotal reports from people living with HIV/AIDS that Medicaid HMOs licensed under the state's new HealthChoices program are unable to identify which of their doctors are qualified to provide AIDS-related care.
In a press conference, the Law Project and other advocates charged that the state's plan to require Medicaid beneficiaries to enter managed care plans starting January 1 is "woefully lacking" for people with AIDS and other chronic conditions.
Law Project Executive Director Nan Feyler called for a one-year delay in shifting HIV-positive patients into the state's HealthChoices program. She said that activists were not "trying to shoot down HealthChoices," but were "trying to make it adequate." The charges followed an informal phone survey conducted by AIDS activists posing as patients trying to find doctors experienced in treating AIDS. According to the Law Project, all four of the HMOs contracted by the state for HealthChoices "had trouble coming up with an experienced doctor's name." The HMOs had no comment on the findings.
A coalition of people living with HIV disease, AIDS service providers and other advocates have called for a delay in the enrollment of people with HIV/AIDS in HealthChoices until the state addresses a variety of concerns they have about access, quality of care, and medical standards. A delegation from the federal Health Care Financing Administration -- which must approve the state's request for a Medicaid "waiver" before HealthChoices can be implemented -- was scheduled to hold a public hearing in Philadelphia on November 15th to hear directly from people with HIV/AIDS on the issues. [Full report next week.]
"Today we are six weeks away from the implementation of HealthChoices, which, despite assurances, has not one single safeguard in place to protect people living with HIV and AIDS whose very lives will depend upon the quality of this health system," said Joe Cronauer, executive director of We The People.
"Even though the state has said that every HMO will provide HIV specialists, the state still can't even define what an HIV specialist is. Even though the state has said that every HMO will provide HIV specialists, not one HMO contacted could identify one HIV specialist for a person forced into entering a plan. Not one HMO. Not one HIV specialist," Cronauer said.
"Even though we know by scientific studies that quality medical care leads to longer life for people living with HIV and AIDS, there is no standard of care built into HealthChoices. Even though we know that health care for those of us living with HIV and AIDS costs more than health care for healthy people, the state has not provided for a higher level of dollars to be used for the care of people living with HIV and AIDS. So when we need that CAT scan, too bad. When we need that protease inhibitor, too bad. When we need to stay alive, too bad."
Dr. Peg Dierkers, policy director of the state's welfare department, said, "We were not going to be able to fix the entire health care system for people with HIV at the very beginning." She said that the "department will be able to set higher rates for AIDS and other chronic diseases when precise patient data are available within two or three years."
Critics noted that many studies have been conducted which show that life-time medical care for people with HIV/AIDS is about $120,000, and that the state already possesses its own records of how much it has paid for AIDS care through the current Medicaid program.
Activists, however, reported that people with AIDS in New York were exempted from the state's Medicaid managed care plan because of complaints over care.
"My message to DPW is that the information necessary to provide quality medical care is available now if we're willing to use a little common sense, and HealthChoices can't begin until safeguards are built in for people with HIV and other chronic diseases before enrollment," Cronauer said.
"People with AIDS can't and won't be used as guinea pigs of the state over the next few years while they determine what level of health care and how many dollars it takes to not kill us. There are examples of how this can actually work across the nation. We have to delay enrollment and fix the problems now so the price of the state's learning curve won't be our deaths."
Law Project senior attorney Ronda Goldfein said, "The results of the survey are only the tip of the iceberg. If HealthChoices goes into effect January 1, many people with AIDS won't be able to access necessary medical care. HealthChoices has no HIV standard of care, no HIV-related quality assurance standards, and no reasonable grievance procedures for consumers unfairly denied care ... And, most important, there is no financial incentive for HMOs to provide the costly medical care required by people with HIV/AIDS."
What's Wrong with HealthChoices?
Meanwhile, ACT UP Philadelphia has issued a fact sheet outlining the major problems which HealthChoices presents for people living with HIV/AIDS. They include:
Not enough skilled doctors
The four remaining HMOs that are participating HealthChoices do not have enough skilled doctors. In fact, a survey of the four HMOs released today indicated that none of them could even refer a person with HIV to an experienced provider within their network.
Several studies have proven that people without access to experienced doctors in managed care plans live half as long as those with knowledgeable doctors.
Even without a definition of what an HIV specialist is, none of the HMOs who will be providing services under HealthChoices have been able to provide a list of skilled providers.
The State Department of Public Welfare continues to assure that people with HIV/AIDS will get an experienced doctor as their primary care provider, but both HCFA and the state have refused to ensure that an adequate number of knowledgeable providers will be hired by the HMOs.
At the same time, only four HMOs out of the original six that won contracts are still willing to provide services under HealthChoices.
+ People with HIV must be guaranteed automatic access to a doctor who knows how to treat HIV disease.
The state guarantees access to a "specialist", but doesn't define what that means.
Studies have proven that people with HIV/AIDS live twice as long if their doctor has experience treating people with HIV. To provide good care for people with new diseases with continually changing standards of care (like HIV), doctors must do a lot of reading and attend conferences to keep up with the new developments that can save lives.
Activists got the state to guarantee PWAs a specialist primary care provider -- a knowledgeable doctor with HIV experience. But the state now refuses to define a "specialist." This means that any doctor who has ever seen a person with AIDS crossing the street could be pressured to call themselves a "specialist", so that the HMOs can claim that they have enough doctors to ensure adequate capacity.
No minimum standards of care.
A standard of care is set of guidelines that make clear the minimum level of care that a person should be receiving at different stages of HIV disease. Managed Care plans save money by denying what can sometimes be expensive cutting edge treatments and procedures that can help people live longer. ACT UP Philadelphia publishes a standard of care, now in its 10th edition.
Corners cannot be cut when it comes to the lives and health of people with HIV and other chronic illnesses.
+People living with HIV must be guaranteed a minimum standard of care, updated on a regular basis.
Difficult to see an out-of-plan doctor.
You will only be able to see a doctor who has enrolled in the plan you sign up with. It can take a long time for an HMO to add a new provider (as much as a year). The HMOs can also refuse to add a doctor, if they think the care that person delivers is too expensive. Some HIV experienced docs may not participate.
+ PWAs must have the choice to see the doctors they have built a relationship with. HealthChoices must allow patients to "opt-out" if their doctor is not a member provider.
No HIV capitation rate.
The State pays a set rate for all people enrolled in a managed care plan. It costs more to treat people who are sick than it does to enroll people who are healthy. Because there is no special rate for people with HIV, HMOs will lose money if they provide even a reasonable level of care. This means that the HMOs have incentives to not deliver aggressive treatment.
+ The State must pay a fair rate for each person with HIV enrolled in a plan to ensure that the HMOs are able (and willing) to provide decent care.
Lousy grievance procedures:
If you have a problem with your HMO, you will have the right to file a complaint -- with the HMO, which is where you were getting the grief in the first place.
+ PWAs must be able to complain to an impartial, outside body immediately, not after months of appeals within the HMO.
Course of HIV infection can be predicted
The long-term clinical course of HIV may be predicted by serum beta-2-micro globulin levels soon after infection, according to a team of British investigators.
Dr. Andrew N. Phillips and others from the Royal Free Hospital School of Medicine in London evaluated beta-2-micro globulin levels in frozen serum samples obtained from 63 hemophiliac patients an average of 4.9 months after HIV seroconversion.
Over the following 10 years, patients with higher initial beta-2-micro globulin values "...tended to develop severe immunodeficiency/AIDS more rapidly than those with lower levels." Independent of this effect, age also predicted a more rapid course of the disease.
These two factors, older age and high serum beta-2-micro globulin, may be used to "...identify a group of patients very early in HIV infection in whom the prognosis is particularly poor." Dr. Phillips suggests that this subgroup "...requires close monitoring and consideration for early antiretroviral therapy," since the benefits of such treatment will likely to outweigh the risks in these patients.
Roche adds confusion to free viral tests
Roche Pharmaceutical is planning an attempt at correcting the summer blunder whereby thousands of people (a relatively small fraction of them here in Philadelphia) have been deprived
of the results of viral load tests they took back in June-August, according to local activist Glenn Brown.
Their plan is to release all of the results (about 25,000) by early December, and to give all of these people coupons valid for two (free) additional tests, with a promise that people will get their results within 10 days. There's at least one catch, however, according to Brown: the coupons will be distributed to participants over several months, i.e., even though the results will come back relatively soon, the coupons for additional tests may not be available until sometime in March, 1997.
Brown notes that Roche's own guidelines for use of the Amplicor HIV-1 Monitor, its own viral load test, says that "after instituting a new therapy or changing therapy, viral load should be monitored at baseline (2 readings/1 week apart) and then at the time interval when the drug (or) drug combination is predicted to have its maximum effect (usually between 2 to 12 weeks after therapy has begun). "All us poor fools who took advantage of their program don't even have the option of following Roche's guidelines for using the test," Brown says. "And those who actually
initiated a new treatment regimen back when they thought they would get baseline results may have been on medication(s) for 9 months before they know whether their treatment is even working! This is unacceptable. A lot of things can happen to a person living with HIV/AIDS in 9 months, especially when we don't know whether our treatments are working," he said.
Brown suggests that people with HIV/AIDS and their advocates contact Paula Evangelista, Roche public relations director, to at 908-253-7660 to urge her to get Roche to reconsider their proposed restart program, and get people their viral load results immediately.
3TC blocks Hep B in HIV+ men
Lamivudine treatment of male patients coinfected with the HIV and hepatitis B viruses resulted in undetectable levels of hepatitis B viral replication in nearly 90% of patients with high hepatitis B virus (HBV) replication at baseline. Results of 1 year of follow-up in an open-label study that is ongoing in France appeared in the Annals of Internal Medicine.
One-year results are available on 40 men with progressive HIV disease who were also infected with hepatitis B. All of the patients were refractory to or unable to tolerate any antiviral treatment other than lamivudine. Dr. Yves Benhamou of the Groupe Hospitalier Pitie-Salpetriere in Paris and colleagues administered lamivudine at a dosage of 600 mg/day or 600 mg/day followed by 300 mg/day.
Thirty of the 40 patients in this series had high levels of HBV replication at baseline. At the 1-year mark, Dr. Benhamou reports that, in those with high baseline replication, HBV DNA serum concentrations had dropped below 5 pg/mL in 96.3%. HBV DNA could still be detected in the serum in 11.5% of the study subjects.
Meanwhile, U.K. investigators report in The Lancet that lamivudine "...may prove useful in preventing recurrence of hepatitis B after liver transplantation, [although] the effect on survival....remains to be assessed." Dr. G. Dushelko of the Royal Free Hospital School of Medicine, London, and colleagues base their conclusion on a study of 17 patients with chronic hepatitis B requiring orthotropic liver transplantation.
Fleming out, Shalala stays for second term
Secretary of Health and Human Services Donna Shalala will stay in her cabinet post during President Clinton's second term but the top White House AIDS adviser is quitting within the next few months, administration sources said this week.
Shalala, a former chancellor of the University of Wisconsin in Madison with a long interest in childhood poverty issues, has worked closely with Clinton on welfare reform.
She had been widely expected to remain for a second term, and sources said her tenure was officially confirmed this week.
Patsy Fleming, the head of the White House AIDS office, has told her staff and AIDS activists she plans on leaving the job by next June. She was not immediately available for comment, but associates confirmed her departure.
Although some of the more radical AIDS activists have criticized her, Fleming has generally been well-liked by AIDS advocates, who have lauded her efforts to get public funding for patients to pay for the costly but life-prolonging new drugs..