actionletters - udcas07

We pray that this letter finds you and yours in the best of health and spirits. We also congratulate you on your recent promotion to rear admiral in the U. S. Public Health Service Commissioned Corps. ¡Felicidades!

After nearly three consecutive months of local protest and civil disobedience in front of the Puerto Rico Department of Health (PR DOH), San Juan Eligible Metropolitan Area (SJ EMA) offices, the Puerto Rico state legislature and governor’s mansion with no viable response or remedy in sight, we are compelled to reach out to the agencies and legislators at the Federal level to provide meaningful, manageable and long-term respite from the escalating crisis of HIV/AIDS funds management in Puerto Rico.

In our twenty five year struggle to survive the ravages of HIV/AIDS the single biggest threat to infected/affected persons living in Puerto Rico at this moment is the very healthcare system that is tasked to protect us. While medical advances continue to improve the quality of life for persons living with HIV/AIDS, both the SJ EMA and the PR DOH wallow in administrative incompetence, antiquated tracking, reporting and surveillance system, deficient treatment and sadly gross charges of possible corruption that threaten our ability to remain healthy and endure.

It is time that the Federal system under the Ryan White Care Act, the fountain of hope and survival for Puerto Rico’s HIV/AIDS patients, take a more active role in ensuring that the promise, spirit and intent of this hopeful legislation actually reaches the persons it is meant to serve. This effort will require that your agency and perhaps the US Senate and House committees with oversight for the funds actively participate in reaching a long-term solution to Puerto Rico’s deepening HIV/AIDS crisis. The local Puerto Rico state and municipal governments (specifically the SJ EMA) are simply incapable and perhaps unwilling to take the corrective steps necessary to make these Federal programs work. The burden of this inaction is cast on the backs of the very citizens it is meant to provide care for.

Taken individual each grantee’s administrative system has its unique and very particular challenges. Specifically the PR DOH, grantee of the Ryan White Title II, ADAP and HOPWA (not a HRSA program but vital to PLWA) funds has for many years ignored the cries to overhaul its cumbersome bureaucracy. The growing AIDS Drug Assistance Program (ADAP) patient waiting list is a specter that periodically reappears. Most PR DOH bureaucrats privately recognize it but publicly deny its existence. As a result medication, where it is available, is rationed to patients. Given that the PR DOH has no effective means of accurately accounting for the number of qualified persons without ADAP medical service the waiting list ranges from a conservative 131 (as estimated by patients advocacy groups) to close to 1,300 as declared by the state legislature in a October 2006 resolution (PR R. de la C. 5678).

Further, a recent Office of Minority Health sponsored client satisfaction survey by the PR DOH details the inadequacy of the state’s health bureaucracy. Of the eight STD and HIV/AIDS clinic operated by the state, many do not have working bathrooms, running water, and electricity, telephones, faxes, and computers, and current fire, health, OSHA inspection certificates - the basic amenities to operate a viable health clinic. These decrepit conditions themselves present a public health threat to the patients, family members and the general public they are supposed to care for. Most clinic directors interviewed in the study admit to having outdated treatment protocols. Nearly all document that they are grossly understaffed; there are only a handful of doctors some of which double as administrators, no nutritionist, only one and one-half pharmacist, three psychologist, two licensed social workers, and three health educators in a medical care system that purports to treat over 9,000 PLWA. All of the clinics interviewed expressed moderate to severe difficulty in accessing ADAP medication.

Even more alarming than the PR DOH is the fact that for the second time in a dozen years the SJ EMA is embroiled in alleged corruption and mismanagement of the Ryan White Title I funds. For years the Planning Council (PC) has been trying, unsuccessfully, to scrutinize the operations of the administrative agency the Aids Task Force (ATF). Payments by the ATF to Community Based Organizations (CBO’s) are notoriously late, often as much as nine months overdue. As a result of various administrative negligence and non-compliance by the ATF your office appropriately placed the grantee on restricted drawdown. The tension between the PC and the ATF culminated in November 2006 in the sudden dismissal by the current grantee of the entire council without due process or notice. To date however, the ATF has virtually stopped reimbursing CBOs some from as far back as September 2006. Some CBO’s have had no choice but to stop providing services and reduce already limited staff.

Together these two systems, the PR DOH and SJ EMA account for more than 75% of the funds appropriated for the care and treatment of PLWA in Puerto Rico. They also support a myriad of CBO, their very dedicated staff and employees, many themselves persons affected/infected with HIV/AIDS.

The combined impact of the gross negligence and possible corruption of these two government agencies is that patients continue to go without medication, available treatment is sporadic and antiquated, often disrupted because of shortfalls, the human capital of most clinics and CBO’s are left unpaid for months, become economically disadvantaged and eventually resign. Patients are often left without any alternative. In the past month alone a combination of 5 CBO’s have been forced to shut down or significantly reduce their operations leaving over 970 patients without service. It is understandable then why the Enhancing Care Initiative of the Harvard School of Public Health AIDS Initiative project conducted in Puerto Rico (February 2005) found that;

“98.1% of PLWHA showed indicators of clinical depression, and they are significantly associated to their number of needs and AIDS-related symptoms. These results are consistent with research conducted in other regions of Puerto Rico. Based on the situation analysis and research results, we concluded that services offered are insufficient and that problems related to the accessibility to them contribute to the fact that PLWHA in the western region of Puerto Rico do not receive the quality of services required for their health condition.”

In Puerto Rico the challenges to these government agencies transcend local partisan politics; both parties are equally culpable and naively innocent. Historically, administrative incompetence in the HIV/AIDS healthcare system plagues all political persuasions. The short term solution lies in the willingness and ability of the Federal government, specifically your agency and the Senate/House committees that have oversight responsibility to immediately intervene to prevent the entire system from spiraling out of control. This will require that systems be put in place to; ascertain the severity of need, evaluate and implement effective change, and disburse the long overdue funds to the CBO’s so that they can immediately resume operations.

This can readily be accomplished by temporarily assigning administrative responsibility of the available funds to a competent and trustworthy local agency such as the local office of the controller or the office of a Federal judge. A longer-term solution might include maintaining a permanent Federal presence on the island with oversight responsibilities for these and other federal funds.

We are growing increasingly exhausted and both physically and emotionally ill of the nearly weekly protests and civil disobediences but we are committed, at great risk to our personal health and quality of life, to continue this struggle. We are reaching out to you and the corresponding Federal Legislators in this struggle. Please do not disappoint us.

Cordially Yours;

Anselmo Fonseca

Pacientes de SIDA Pro-Politica Sana (PSPS)

Mrs. Sandra Torres

Executive Director, Bills Kitchen

On Behalf of and supported by the undersigned (attached)

5 other ASO/CBOs Directors also signed.

Copy to;

Office of the Honorable Governor of Puerto Rico

Honorable Luis G. Fortuno, US House of Representatives

Members of the US Senate HELP Committee

PR Secretary of Health,

PRFAA

Other US based CBO’s

Latino Commission

Etc.