November 17, 2006
PALMETTO POWER
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Even Santa got a visit from Karen Bates (C2EA-SC) this year. She asked for the end to AIDS this Christmas. |
Cell phone in one hand and landline in the other, Karen Bates made about sixty phone calls today. She is worried her voice is giving out, but she stays on the phones because three people in her home state of South Carolina have died since officials there imposed a waiting list for their AIDS Drug Assistance Program (ADAP) last June.
On Monday, activists worldwide will stand in solidarity with Karen and other dedicated SC AIDS activists to say "NOT ONE MORE."
Karen, the co-chair of South Carolina Campaign to End AIDS, was diagnosed with HIV in 1998.
After she lost her insurance and found out no new insurance would cover her "pre-existing condition," she has relied on public assistance to pay for life-saving AIDS treatment, including prescriptions so expensive they would be beyond the means of the majority of Americans.
So far, Karen's been lucky. But state and federal officials have failed to make sure there's enough funding to provide care and treatment for everyone in her shoes. More than 300 people are currently on the SC ADAP waiting list, praying they will receive care in time. But time is starting to run out.
In response, people living with HIV/AIDS in SC, across the U.S. and in South Africa will act together to memorialize these needless deaths and demand emergency action.
A rally and prayer vigil in Columbia set for Monday has won the backing of the state AFL-CIO, AIDS service organizations and LGBT groups, as well as PLWHAs from cities, towns and rural areas across the state. Emotions are running strong and getting stronger as Monday approaches.
The struggle to survive in South Carolina
"Eight hundred and twenty people here are newly infected each year. Twenty-five years into the epidemic now, and given the numbers and our lack of resources, we are crashing and we are burning. We depend on Ryan White money, but state has not made a big enough investment in our own dilemma. We need more money," said Bambi Gaddist, Ph.D., Executive Director, SC HIV/AIDS Council and member of the SC AIDS Care Crisis Task Force.
Economists the world over have argued that HIV treatment is a wise investment (and SC should also be sinking mad money into prevention, but that is another article). Gaddist estimates that ARVs cost $10,000 a year but just one AIDS-related hospital stay will cost at least $15,000.
"AIDS is clearly an economic issue," she said. "We are at a place now where our healthcare system, Medicaid, and Medicare are on the wings of bankruptcy if we do not make a joint, bi-partisan effort to stop what we see occurring. This impacts the whole community whether the community wants to admit it or not," she said.
Charity care isn't enough to stay alive
Individuals in need of treatment but unable to rely on ADAP, either because they are on the waiting list or can't meet tight eligibility requirements, sometimes receive drugs through other programs like the charity "patient assistance programs" run by pharmaceutical companies.
Only a portion of those on the ADAP waiting lists can get access to PAP meds. And these alternative routes to a bag full of antiretrovirals cannot replace the comprehensive treatment and care that’s supposed to be available through ADAP or Medicaid. And getting access to even inadequate charity care is time consuming (leading to further treatment delays), difficult, and hard to accomplish without a full-time case manager.
SC AIDS service groups report their case managers are spending well over half of their time helping clients access meds. But case managers are not hired to be liaisons to drug company charity programs. They are charged with addressing other critical issues: food and nutrition, housing, alcohol and drug addiction, and complex concerns about HIV disclosure, work and relationships.
Meanwhile, clients who manage to get into charity care anxiously wonder how long the drug companies will fund their meds.
"Imagine being diabetic and wondering where your insulin is coming from. People living with AIDS need equal access to meds like [any other sick person]," explained Gaddist.
ADAP crisis deja vous
The waiting list in South Carolina is ten times longer than the next longest list (33 in Indiana) but the ADAP crisis is part of the AIDS care access crisis that's hitting nationwide.
The funding shortage manifests in waiting lists, abbreviated formularies (the list of available AIDS medications), and invisible need. Although ADAP has $2.2 million more than it did in FY05, another 200,000 people in this country were newly infected last year, and lack of data makes it is impossible to say how many of these need access to medications but can't get it.
Where there is no public data, it does not mean there is not a problem with access. It just means we don't know quite how bad things are.
"The highly visible ADAP crisis in places like South Carolina should be a call to political leadership from the White House and from Congress to deal with the ADAP crisis that we have all known about for the past five years," said William Arnold from TII CANN - Title II Community AIDS National Network.
This isn't the first time Americans with AIDS on ADAP waiting lists have died.
In 2003, three people in Kentucky were casualties of this same political indifference. Then as now, activists mobilized. In June 2004, President Bush announced immediate availability of an additional $20 million in drug therapies for the ten states with ADAP waiting lists as of June 21, 2004: Alabama, Alaska, Colorado, Idaho, Iowa, Kentucky, Montana, North Carolina, South Dakota and West Virginia.
While that $20 million saved thousands of lives, it hardly made a dent in the ADAP shortages. The shortage persists, official indifference continues, and the folks keep dying. But we activists keep fighting back demanding what's needed to save lives.
NOVEMBER 20: NATIONAL AND INTERNATIONAL CALL-IN ACTION
On November 20, make three phone calls to government officials who can stop the deaths and end the ADAP waiting lists in SC and nationwide:
- Call SC Health Commissioner Earl Hunter at (803) 898-3432 and tell him to make an immediate request to the Budget and Control Board for $3 million in emergency state funding for ADAP.
- Call SC Budget and Control Board Executive Director Frank Fusco at (803) 734-2320 and tell him the BCB must approve $3 million in emergency state funding for ADAP.
- Call US President George Bush at (202) 456-1414 ask him to send an emergency message to Congress asking for $641.9 million in new funding for the Ryan White CARE Act to end the waiting lists for treatment and care across the US.
These actions are organized by the South Carolina Campaign to End AIDS (SC-C2EA), a statewide grassroots organization of people living with HIV/AIDS and our supporters, dedicated to advocating for the rights of all people infected or affected by HIV/AIDS.