Anselmo Fonseca VP / Co-Founder Pacientes de SIDA pro Política Sana

1. Anselmo Fonseca VP / Co-Founder Pacientes de SIDA pro Política Sana ADAP CRISIS SUMMIT July 5-7 2010 Washington, DC

2. The State allowed their 8 Epi-clinics to become in disarray and unsafe for working while providing less than standard quality of care, and provide life saving drugs in a rationed manner with a very high probability even expired. Some CBOs and Service Providers were forced to severely reduce and eliminate services while some even closed an office or two in other regions.

3. SJ-EMA Part –A: 2006 - 2008 SJ-EMA Part-A and HOPWA some payments were 90-120 days late, others 6-9 months. • Patient dumping from SJ-EMA to the PR-DoH Part-B helped foment a waiting list. • * FBI, HHS, OIG, IRS- Raided four municipal offices including the San Juan AIDS Clinic, this investigation ongoing and out-come still pending.

4. PR-DOH Part–B: 2006 – 2008 PSPS, along with CBOs and CPTET clinic director had indentified over 500 persons waiting for initial and change of TX and charts for 6-9 months were hidden lock in an office pending approvals. Along with the Project Officer a waiting list was confirmed and officially constituted, seeing how the PR-DoH Secretary would not recognize the existence of a list. Hundreds of patients migrated to other states, While others felt forced to get into clinical trials in order to guarantee continuity in treatment, many were persons with Private Insurance that were not able to cost the high Co-Pay and Deductibles. • The PR-DoH had no ADAP Co-Pay System in place, so ADAP was paying 100% of TX of PLWHA w/ Private Insurance since 1996. • The OIG continuously found violations against the grantee for mismanagement of ADAP funds hence having to return $48 millions to HRSA for FY 2002 – 2004, (Other audits pending). As of 2007 the state would pay 100% of ADAP TX to persons instead of Co-Pay and Deductable from the state’s ordinary operating funds.

5. “The State attempts against the health and lives of the Patients from the 8 State Epi-Clinics” sited local press. • All the while failing to comply with the proposed plans for the HIV/AIDS patients in the entire island as findings highlighted in an OIG audit # A-02-08-02003. • The audit “Review of the Puerto Rico AIDS Drugs Assistance Program's Controls for Accounting for and Safeguarding Drugs” from 2004-2006 for these years the PR-DoH received $75,332,082 for life saving drugs for persons living with HIV/AIDS. • PR-Doh Admits to canceling contracts of delivery company which were tasked with picking and drop-off prescription for 200 patients to and from the PR-DoH Central Pharmacy Warehouse.

6. Additional findings: • Contrary to local and federal regulations the DoH did not secure the proper dispatch of drugs under the supervision of a licensed pharmacists. • That three Epi-clinics did not have and adequate inventory of drugs. • That expired drugs were not disposed of, nor credit requested and that expired drugs found on those shelves were very likely dispatched to patients jeopardizing there regiment and health.

7. Florida/Caribbean AETC-PR Global findings of Patient Chart reviews to Detect the Educational Needs of the State Clinics for the Prevention and Treatment of Transmittable Deceases Introduction- During fiscal 2006-2007 the Florida/Caribbean AETC realized 8 visits to the Epi-Clinics of the P- DoH. It’s objective was to identify the educational needs, training nad consulting of the clinical personnel which provide services to person with HIV/AIDS. The methodology used in this needs assessment was the revision of patients clinical charts.

8. In the process a total of 198 charts were reviewed, of these 61% corresponded to males and 39% females. 62% of the males were less than 50 years of age and 38% were older than 50. In the female group 68% less than 50 years of age and 32% were older than 50. The revision of charts was realized using an instrument which gathered information on 6 clinical management aspects of the patient. Following are the most significant findings according to the most recent guidelines for Treatment of Adults and Adolescents suggested by the Federal Department of Health at the time that these visits were conducted.

9. Global Findings Laboratories: 61% of the charts reviewed showed that patients with a good CD4 count were in control of their illness (CD4 >350) and 62% of the charts revealed that patients a viral load of <1,000. Both indicators were consistent with patients in good control of their illness. These lab results (CD4 y Viral Load) are both done every 3-4 months as suggested by DHHS guidelines.

10. When changing ARV therapy it is necessary to repeat the Viral Load every 2-8 weeks and although close to 63% of the clinics did this, 26% did not. Although other important laboratories works is best for the management of the infected patient these getting done varied. In 70%of the charts reviewed the CBC and Lipid profiles were done every 3-4 months as suggested by the guidelines. However less than half of the charts reviewed showed that these had not been done after a change in therapy.

11. The tests for Toxoplasmosis (78%), Chlamydia (93%) and Gonorrhea (95%) were not routinely done in the majority of the charts. Even though a baseline VDRL had a high percentage (67%) in all of the charts reviewed, only 23% continued to get done annually as recommended. The test to detect Hepatitis A y B were only done in half of the charts reviewed, contrasting with the Hepatitis C test done in 65% of the cases. Vaccines- In the majority of the charts reviewed, the administration of vaccines were not routinely done. This finding was consistent in all of the Epi-Clinics.

12. PROFILE OF PEOPLE LIVING WITH HIV/AIDS IN THE WESTERN REGION OF PUERTO RICO AND THE EVALUATION OF SERVICES PROVIDED TO THEM “The needs reported by the PLWHA were economic support, housing, psychological services, medication, medical treatment, and transportation. Regarding symptoms, 98.1% of PLWHA showed indicators of clinical depression” 2005- Harvard Enhancing Iniciative

13. * 2003 “La Reforma” (PR-SHIP) State Health Insurance Plan, was implemented in the San Juan Metro area, where three of the states Epi-Clinics with the highest incidence rates of HIV and STDS cases are registered, (San Juan, Bayamón, Carolina). • During this year the ADAP Program paid 100% for all PLWHA at these clinics 100% of their medications at an estimate of $17,000,000, when in fact “La Reforma” was suppose to pay for all regular and AVR drugs except PIs

14. Audit (A-02-06-02000) 09-29-2008 Review of the Puerto Rico Health Department's Compliance With the Ryan White CARE Act Payer-of-Last-Resort Requirement Executive Summary “For grant years 2002-2004, we estimated that Puerto Rico claimed $24.3 million in unallowable Federal funds under Title II of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990. These claims did not comply with the payer-of-last-resort requirement that Title II funds not be used to pay for HIV/AIDS drugs or services that are eligible for coverage by other Federal, State, or private health insurance. The CARE Act, which is administered by HRSA, funds health care and support services for more than 500,000 individuals each year who have HIV/AIDS and who have no health insurance or are underinsured. Of the 100 prescriptions that we sampled, 57 prescriptions were incorrectly claimed for patients who had other health insurance that would have covered the drugs. We recommended that Puerto Rico refund $24.3 million and develop procedures to bill HIV/AIDS drugs to the Federal, State, or private health insurance plans with primary payment responsibility. Puerto Rico did not directly address our recommendations but disputed some of our error determinations. Based on additional documentation provided to us, we revised four of our original error determinations and the refund amount.” Complete Report  Download the complete report (PDF)  Their are at least 2 more audits pending to be made public, each in large part will consist of similar findings.

15. 2008 -2010 The PR- DoH and Advocates sought that HRSA approve the use of $2 million for Co-Pays. • The states’ proposal for FY ‘08-‘09 included implementing a Co-Pay System but locally it got put on hold, 3 DoH Sec. were not confirmed. Advocates were not sitting idly and kept complaining to HRSA and ONAP and were successful in getting the funds to carried-over for ’09-’10. • * 2010 - 2011 Currently those patients from the clinical trials have ended and are now again faced with an ADAP system that is still not capable of complying with conditions of award. Since the part– B: Co-Pay program is still not working, Case workers keep telling patients to get on the Sate Health Insurance Plan and drop their private plans. • The DoH now says that for 9/2010 the Co-Pay System will be in place and will begin providing that service fulfilling their contractual obligations to the affected population for whose health care these funds were granted.

16. Harvard Enhancing Iniciative finding: • 2010 – Very little improvement in services but basically still the same unmet needs, (Current Needs Assessment) • 2009 - 2010 SJ- RW-EMA Part- A and HOPWA are paying reasonably as grantee. • Ponce will still be an EMA, Caguas will continue to be TGA. • * 2010-2011 State HOPWA Contracts w/ ASOs are 5-6 months in rears.

17. 2008- 2010 Other Current Events: 22,000 – 24,000 public and private employees laid-off, thousands were health related professionals. • 110 Emergency Room medical staff were laid-off of which 53 were specialized doctors. • Doctors contracted with the state providing services at the islands’ main medical complex, (“El Centro Medico”) and EPI-clinics were being forced to accept a cut of 15% for their services, while the CBOs were cut 12% last year and 15% this year.

18. 2008- 2010 Other Current Events: National Quality Center “Since 2008 the PR-DoH has been participating in improving quality of care within all RW programs. However this endeavor has been faced with much resistance from within by the very same entrenched mediocre staff. The implementation of Client level Data entry has had its obstructions but is progressing at a snail pace. However the Central Pharmacy Distribution Center still has not intergrated it's inventory system with the clinics. So client databases were populated in reverse from prescription activities rather then clinical.

19. 2008- 2010 Other Current Events: Part-B Planning Body Since 2008 the PR-DoH had to reconstitute at HRSA insistence Finally there is a needs assessment and comprehensive plan. However they reiterate what we have known all along, services delivery is poor, little or none is some regions and the nneds are the same as 10 years ago or even worst. Buy-in from some DoH leadership has been minimal or none. Add to that the constant turn-over of long-time key stakeholders and it only further impide steady progress.

20. 2008- 2010 Other Current Events: Local Legislature pending: “Mi Salud” new version of the local State Health Insurance Plan, somewhat in-line with the federal reform, but with a single payer. Merge 6 state oversight and citizens protection agencies into 1 Ombudsman, i.e. Patients, Womens, Elderly, Veterans, Disabled, Consumers. “The most vulnerable populations will be denied independent advocacy and oversight”.

21. Contact Information Anselmo Fonseca 787-948-8890 afonseca@propoliticasana.org afonseca62@gmail.com