TABLE OF CONTENTS CA 2013 Comments Re DOH Oversight of HIV/HCV Care in NYS Prisons

Transcription

1 TABLE OF CONTENTS CA 2013 Comments Re DOH Oversight of HIV/HCV Care in NYS Prisons INTRODUCTION... 1 EXECUTIVE SUMMARY... 3 SECTION 1 OVERVIEW OF HIV/HCV CARE IN DOCCS PRISONS Prevalence of HIV and HCV in the DOCCS Identification and Testing for HIV and HCV in DOCCS HIV Identification HIV Testing Hepatitis C Identification Hepatitis C Testing Medical Staffing and Resources for Prison Healthcare Funding for Health Services Medical Staff Vacancies Medical Staffing and Issues of Quality of and Access to Care General Healthcare in DOCCS Facilities Patients Assessment of Overall Healthcare in New York Prisons Access to Medications Access to Specialty Care Services Discharge Planning Continuity of Care Chronic Care of Patients with HIV and/or HCV HIV Care Hepatitis C Care AIDS Institute Prison Services Criminal Justice Initiative Positive Pathways Project Hepatitis C Continuity of Care Program AI Monitoring under DOH Oversight Law of HIV and HCV Care in State Prisons Current Review Process and Notice to the Public Scope of Review Review Instruments for IPRO Medical Record Reviews and & Review Methods DOH Oversight and NYS Medicaid Redesign and Federal Affordable Care Act Prevention Considerations for HIV and HCV Education, Particularly Peer Education, as Prevention Treatment as Prevention Harm Reduction as Prevention Comprehensive HIV/HCV prevention program SECTION 2 - SUMMARY OF HIV AND HCV CARE IN PRISONS VISITED BY THE CORRECTIONAL ASSOCIATION IN SECTION 3 RECOMMENDATIONS CONCLUSION APPENDICES i-

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3 CORRECTIONAL ASSOCIATION OF NY 2013 COMMENTS DOH OVERSIGHT OF HIV/HCV CARE IN NYS PRISONS INTRODUCTION We are writing to present information to the New York State Department of Health (DOH) AIDS Institute (AI) to assist in its monitoring of HIV and hepatitis C (HCV) care in NYS Department of Corrections and Community Supervision (DOCCS) prisons pursuant to Public Health Law 206(26), referred herein as the DOH Oversight Law. In particular, we are submitting information as part of the public input into the DOH AI review process and request that the information provided in this memorandum be considered in your assessing whether the care in DOCCS facilities is meeting community standards. The Correctional Association of New York (CA) is an independent, non-profit organization founded by concerned citizens in 1844 and granted unique authority by the New York State Legislature to inspect New York State prisons and to report its findings and recommendations to the legislature, the public and the press. Through monitoring, research, public education and policy recommendations, the Correctional Association strives to make the administration of justice in New York State more fair, efficient and humane. As part of the CA monitoring activities, we have visited 18 prisons since January 2011, which was the last time the AI issued a report about HIV and HCV care in the prisons. At each prison, we collect specific data concerning HIV and HCV care, interview medical staff about the prison s healthcare system and survey the incarcerated population concerning their assessment of the care they are receiving at that prison. After such visits, we prepare a written report about all aspects of life within the prison, including healthcare, and make recommendations about how conditions can be improved at that facility if we identify areas of concern. The resultant report is reviewed by DOCCS and the prison staff, and we have a conference call with these officials to afford them an opportunity to clarify or correct any misinformation contained in the report and to discuss both our findings and recommendations. Appendix A CA Prison Visits 7/1/2006 through 8/1/2012 contains a listing of prisons visited by the CA during the six-year period from mid-2006 through mid-2012 and included in our analysis of DOCCS healthcare in this memorandum in which we compare services at different prisons. The public reports on each prison, excerpts of which are submitted with this memorandum as Appendix R Excerpts of CA Reports on Medical Care for DOCCS Prisons Visited by the CA from , include specific information about HIV and HCV care at each prison we visited. In SECTION 2 of this memorandum (page 60), we have prepared a summary of these findings and included more recent data about the visited facilities obtained from DOCCS data pursuant to FOIL requests and other sources. In addition to prison visits, the CA routinely collects system-wide data from DOCCS about medical staffing, prevalence of HIV and HCV diagnoses, testing and monitoring, utilization of specialty care services and other information about the prison healthcare system. Also, for purposes of this submission, the CA obtained more in-depth surveys specifically regarding HIV and HCV care from approximately 100 incarcerated persons chronically infected with those diseases. Utilizing the system-wide information, the HIV

4 and HCV-specific surveys, and the prison-specific information described previously, in SECTION 1 we summarize our assessment of department-wide medical care for patients with HIV and HCV. The CA cannot make definitive statements about the quality of the care provided to specific patients because we have not reviewed medical records of any recently treated individuals in DOCCS with health professionals capable of making such conclusions. Moreover, we acknowledge that we cannot assess whether DOCCS is compliant with community standards at each of its facilities. It is only by carefully reviewing a representative sample of medical records and other healthcare data, and interviewing prison providers and patients, that DOH or any reviewing body can make a determination whether care at a specific prison is comparable to community standards of care. We submit these comments to suggest areas of concern or issues to be investigated by the DOH review process, based upon potential problems we have detected in the healthcare systems at specific prisons, trends we have observed across the healthcare system in DOCCS, and/or problems or concerns incarcerated patients have raised with us about the nature of their care. We urge the monitoring team from AI to consider these issues in making its assessment of compliance. We also ask AI reviewers to consider the recommendations we make in SECTION 3 about the AI monitoring process and consider our input in determining the recommendations AI will make to DOCCS about measures to improve HIV and HCV care in the state prisons. AI has a very important role to play in assessing and improving the provision of HIV and HCV care inside DOCCS facilities. Providing quality medical care in prison is good public health policy because as long as our criminal justice policies criminalize rather than treat behaviors that place people at risk for HIV, HCV, and other serious medical conditions and target poor, minority communities most at risk for these diseases, prisons will provide a significant opportunity to diagnose and treat individuals with chronic medical conditions that often go untreated in the population at large. Moreover, the DOH Oversight Law presents an opportunity for AI to assist in the integration of the incarcerated population and those released from prison into the emerging community healthcare systems being developed through initiatives under the NYS Medicaid Redesign Team and the federal Affordable Care Act. The insights gained from the DOH Oversight process and the cooperation being forged between DOCCS and state health agencies should lead to not only better treatment inside prison and but also improved continuity of care for patients with chronic conditions leaving our prisons. Although focused on HIV and HCV, we believe the oversight process, if done effectively, can benefit all persons leaving prison with medical needs and assist the state in developing systems to efficiently and effectively integrate these patients into community care

5 EXECUTIVE SUMMARY The prison population in DOCCS suffers from very high rates of HIV and hepatitis C (HCV), and the Department has difficulty identifying all those individuals in its custody who are infected and/or engaging these persons in care. Moreover, the quality of care seems to vary significantly throughout DOCCS, in part due to limited medical resources at some facilities and apparent limitations in the training, skill, and/or commitment of some medical staff to provide timely and effective care to every patient. We must emphasize that at some prisons, it appears that patients infected with HIV and/or HCV are closely monitored, are receiving timely and appropriate care, and seem to have few complaints about the care they are receiving. In contrast, at other facilities, there is less access to care due to understaffing, patients have much more limited access to specialty care and other services, and patients express significant dissatisfaction with the quality of care they are receiving. Given this variability, it is crucial that each facility be examined to identify the barriers to quality care, both from a resources perspective and assessment of the quality of care provided by each healthcare person servicing this patient population. The CA estimates that there are approximately 2,700-3,000 HIV-infected persons in DOCCS, the highest HIV-infection rate of any state prison system and representing 17% of all individuals in state prisons in the country with HIV. Similarly, 6,000-6,600 HCVinfected persons are in our prisons, and many of these patients will proceed to develop serious liver disease during their lifetime. More than 95% of these patients will return to their communities, and the effectiveness of DOCCS efforts to provide meaningful patient education, adequate testing and care, broader prevention programs, and improved discharge planning and linkages to community healthcare will determine not only the individual patient s medical future but also the health of their communities. The CA comments, and major findings and recommendations, focus on assessing seven key areas related to the care of HIV- and HCV-infected patients: (1) HIV and HCV seroprevalence in DOCCS facilities; (2) HIV and HCV testing of the prison population and identification of incarcerated persons infected with HIV and/or HCV; (3) medical staffing and resources for healthcare within the prisons; (4) general healthcare in DOCCS, including patients assessment of access to and quality of care provided by clinic and nursing staff, provision of medications, access to specialists and discharge planning; (5) chronic care for HIV- and HCV-infected patients; (6) AI activities related to prison HIV/HCV care and monitoring of the DOH Oversight Law; and (7) HIV and HCV prevention mechanisms. We utilized system-wide data, information obtained from specific prison visits, and surveys submitted to us from HIV- and HCV-infected incarcerated patients in making these findings. The DOH Oversight Law presents an important opportunity both to improve healthcare inside our state prisons and to assist in the integration of the incarcerated population and those released from prison into the emerging community healthcare systems being developed through initiatives under the NYS Medicaid Redesign Team and the federal Affordable Care Act. The insights gained from the DOH Oversight process and the cooperation being forged between DOCCS and state health agencies should lead to better treatment inside prison and improved continuity of care for patients with chronic conditions - 3 -

6 leaving our prisons. Although focused on HIV and HCV, we believe the oversight process, if done effectively, can benefit all persons leaving prison with medical needs and assist the state in developing systems to efficiently and effectively integrate these patients into community care. This will improve public health and result in better use of our state s health resources. MAJOR FINDINGS HIV AND HCV PREVALENCE, IDENTIFICATION AND TESTING High Prevalence of HIV in DOCCS and Failure to Identify Half of the HIV-Infected Prison Population- New York prisons have the highest concentration of HIV-infected persons of any state in the country, representing 17% of all HIV-infected individuals in US state prisons. With an estimated 3,080 infected people as of 2010, 5.3% of the NY prison population was infected with HIV. The CA estimates that there are approximately 2,700 to 3,000 HIV-infected persons currently in DOCCS facilities. Unfortunately, as of January 2012, DOCCS identified only 1,303 HIV-infected persons, which represents only 45% of the entire HIV prison population. DOCCS, DOH and CJI HIV Testing have not been Effective in Identifying the HIV Population- During 2011, 10,154 individuals were tested by the three testing entities, (DOCCS- 4,791; DOH-2,940; CJI-2,423) and only 23 individuals (DOCCS-19; DOH-2; CJI-2), representing 0.2% of the tested population, were found to be HIV-infected. There was significant variability in the rate of HIV testing among the prisons, but all testing programs seem to be reaching only the worried well and not persons most at risk for the disease. Prevalence of Hepatitis C in DOCCS and Identification of HCV-Infected Prison Population- No estimates of the number of persons in DOCCS infected with HCV have been provided by DOCCS or DOH, but based upon data from DOH studies of newly admitted persons to DOCCS, the CA would estimate that at least 6,000 to 6,600 persons in DOCCS are HCVinfected. As of April 2012, DOCCS was aware of 4,504 persons as HCV-infected, representing 70% to 75% of the HCV prison population, of which 2,935 (65%) were chronically infected. Greater efforts are needed to identify the infected population and to ascertain who is chronically infected. HCV Testing in DOCCS is Identifying a Limited Number of Infected Patients- In 2011, DOCCS tested 17,781 persons and apparently identified 487 people as HCV antibody positive, representing a positive rate of only 2.7%. With HCV-infection rates on the order of 10% or more for men and 14% to nearly 20% for women, this testing program appears to be inadequate in identifying the remaining portion of the prison population that is HCV-infected but not yet known to DOCCS. There is significant variability in the HCV testing rate among the prisons. ROUTINE MEDICAL CARE Funding for DOCCS Medical Care has been Reduced, Significant Vacancies Exist at Many Prisons, and Great Variability Exists in the Provider-Patient Ratios Among DOCCS Facilities- During the past three fiscal years, the DOCCS budget for medical staff and nonpersonal services has been reduced by 16% and 17%, respectively. Vacancy rates for physicians - 4 -

7 as of 2012 were 28% and for nurses, 18%. As a result of inadequate medical staff allocations and staff vacancies, many prisons have clinic provider-to-patient ratios in the range of 1:600 to as high as 1:1,156, in contrast to the system-wide ratio of 1:450. Similarly, some prisons have nurse-to-patient ratios as high as 1:185 patients, significantly higher than the system-wide average of 1:100. Limitations on staffing resources are correlated with delays in care and can result in degradation in the quality of the care provided by overtaxed staff. Similarly, DOCCS has a 39% vacancy rate for pharmacists and has closed DOCCS pharmacies at several prisons in the last two decades because the pay rate for pharmacists is insufficient to compete with rates in the community. Consequently, 20 prisons must rely on community pharmacy services, which are more expensive and limit the prisons' ability to monitor their patients medications. Overall, about Half of DOCCS Patients Rate Prison Healthcare in CA Surveys as Poor and Significant Variability Exists in the Care Provided at State Prisons- Only 11% of all general population CA-surveyed persons in DOCCS rated their prison s healthcare system as good, 40% said it was fair, and about half assessed it as poor. Medical care is the most grieved issue in the prison system, and many CA-surveyed persons raised concerns about access to care and/or the quality of services provided for both sick-call encounters and clinic call-outs. Also, significant differences exist among prisons concerning both access and quality of care issues. Although resource limitations are a factor in compromising care, issues of respect, uncaring attitudes, and poor communication between providers and their patients contribute to problems in care. DOCCS' Budget for Medication has Declined, and a Majority of Patients on Medication Report Experiencing Periodic Problems with Getting their Medications- Funding for medical supplies and medications has declined by 6.3% during the past three fiscal years. A significant portion of CA-surveyed patients raised concerns about getting their medications on time and the effectiveness of the drugs they were receiving. Many DOCCS Patients Raise Concerns about Timely Access to Specialist Services and Appropriate Follow-up to Specialists' Recommendations- Expenditures for specialty care contract services have declined by more than 10% in the last three fiscal years. Utilization of specialty care varies greatly among prisons, with high-utilization prisons referring patients at rates 2.5 times greater than at low-use prisons, differentials that cannot be explained by differences in patient populations. Adequate Discharge Planning and Continuity of Care for DOCCS Patients with Chronic Conditions is Challenging- Except for HIV-infected patients, there is no adequate system to ensure that patients leaving prison are provided with appropriate documentation of their condition and treatment plan or a connection to community providers to ensure timely continuity of care. Most patients leave prison without Medicaid or other insurance to pay for community care. CHRONIC CARE FOR DOCCS PATIENTS WITH HIV AND/OR HCV DOCCS System for Chronic Care Varies Among the Prisons- Not all patients with chronic conditions are assigned to a specific provider for monitoring and care, and the use of chronic care nurses to coordinate such care varies among the prisons

8 Great Variability Exists in the Percentage of Patients Identified as HIV-Infected Among DOCCS Facilities- Although 2.27% of DOCCS population was known to be HIV-infected in 2012, the rate varied significantly among the prisons, with facility infection rates as low as 0.5% to rates as high as 4.6%. The combined HIV-infection rate (1.13%) at the six prisons with the lowest number of known HIV patients is three times lower than the rate (3.68%) at the six prisons with the highest HIV rates. There are no significant differences between the prisons in the two groups that would explain such a substantial discrepancy in HIV-infection rates. Variability Exists in the Percentages of the Known HIV-Infected Population Receiving ART- The 10 prisons with the highest treatment rates (89.4%) treated a significantly greater percentage of its infected population than the 10 prisons with low treatment rates (57.3%). We are concerned the low treatment facilities may not be following more recent national recommendations to discuss therapy even with patients who have a CD4 count greater than 500. Great Variability Exists in the Utilization of Infectious Disease Specialists Among DOCCS Facilities- FY data reveals significant variability in the use of ID specialists both between different regions of the state and even among prisons in the same region. For example, the Watertown Hub, near the Canadian border, referred patients to ID specialists at a rate that was nearly five times less than the rate for facilities in the Green Haven Hub. The 13 prisons with the highest utilization referred patients to ID specialists at a rate that was 3.5 times the rate at the 13 prisons with low ID use. At the most extreme, Sing Sing and Bedford Hills CFs refer patients to ID specialists at a rate 16 times the rate at Riverview and Cape Vincent CFs. CA Surveyed HIV-Infected Patients Raise Positive Aspects of Care and Some Concerns- Many CA-surveyed HIV-infected patients seemed stable and did not express significant concerns about their HIV care. Issues that did arise were the failure to have their viral loads monitored frequently, limitations on access to ID specialists, and delays in getting medications. Incarcerated Women with HIV have Higher Infection Rates than Men and Experience Great Variability in Care Across Prisons- As of 2012, there were approximately 240 HIVinfected women in DOCCS facilities, representing 10.2% of the women s population, almost double the male rate. Unfortunately, DOCCS knows of only 97 infected women, just 40% of the HIV female population. Also, there is variability in the percentage of HIV-infected women on treatment, ranging from 61% to 89% at Bedford Hills and Bayview CFs, respectively. Women have somewhat greater access to ID specialists than men, but Albion, which has an HIV specialist on staff, rarely refers patients to an outside ID. One of the most important issues to improve care for HIV-infected women is to encourage them to be tested and to disclose their HIV status and enter care while in prison. DOCCS Recently Altered Its Procedures for Evaluating HCV Patients for Treatment and Approved the Use of the New Triple HCV Treatment Regimens- The CA commends DOCCS for incorporating the new diagnostic blood test of Fibrosure and ultrasound of the abdomen and liver to assess the level of liver disease present in a patient. In 2012, DOCCS approved the use of protease inhibitors in the recently developed HCV triple-therapy regimens, which have demonstrated greater effectiveness in HCV treatment. Prisons Vary in How Aggressively They are Evaluating HCV Patients for Treatment- Significant variability exists in the percentage of the known HCV population at each prison, with - 6 -

9 rates ranging from 4% to 17%. The identification rates at prisons with high numbers of HCVinfected patients are twice the rates at facilities that identify many fewer HCV patients. There are no significant differences in the prison populations that would explain such discrepancies. Variability also exists in the percentage of HCV patients identified as chronically infected, ranging from 56% to 80%. Great variability exists among prisons in the percentage of HCVinfected patients receiving a liver biopsy, which until recently was used to determine if a patient was an appropriate candidate for treatment; prisons that have aggressively ordered liver biopsies perform this crucial diagnostic test at a rate nine times greater than the rate at those prisons that less frequently order this procedure. Limited Treatment of HCV-Infected Patients Occurs in DOCCS Facilities- During years 2009 through 2011, the number of patients initiating HCV therapy dropped significantly, from 322 in 2009, 317 in 2010 to 198 in As of April 2012, there were only 89 patients on therapy at only 35 of DOCCS 60 facilities. Several large prisons, such as Auburn, Bedford Hills, Bare Hill, Green Haven and Eastern, were treating no patients or only one individual when we visited the prison or as documented in 2012 DOCCS data. Although the new triple HCV therapy is available in DOCCS facilities, very few patients are receiving this regimen, and DOCCS has apparently adopted a policy to limit such therapy to one or two patients at a time at any prison. Few patients co-infected with HIV and HCV are receiving HCV therapy; of the 16 prisons the CA has visited since January 2011, only four had a co-infected patient on treatment. CA Surveyed Patients Infected with HCV Raised Concerns about Quality of HCV Care and Their Ability to Receive Current HCV Therapies- Many of the HCV-infected patients the CA surveyed were unclear about their HCV status concerning chronic infection, status of their liver functions and liver damage, and eligibility for treatment. Several patients informed us that they were told they were eligible for treatment but the therapy had not been ordered despite several months delay. Several patients reported that they had received HCV therapy previously with less effective medications and had relapsed, were non-responders or had to halt treatment, but were now interested in re-treatment with the new regimens. It appears DOCCS has been reluctant to evaluate these patients for re-treatment or to order the new therapies for them. Incarcerated Women with HCV have Higher Infection Rates than Men, and Few are Receiving Treatment- Although no reliable data is available concerning the number of women in DOCCS with HCV, we estimate that 17% are infected, a rate significantly higher than in the male population. Based upon this estimate, we believe approximately two-thirds of these patients have been identified by DOCCS. Of the known female HCV-infected population, only 53% have been identified as chronically infected, suggesting DOCCS is not appropriately evaluating this patient population. Limited numbers of liver biopsies were ordered for women in 2011, although the rate is somewhat higher than the rate for men. Only 11 women were being treated as of 2012, representing 4.2% of the known HCV-infected population. Anecdotally, it appears that a larger number of women are being treated in 2013, but DOCCS should be more aggressive in evaluating and treating its female HCV-infected population Discharge Planning for HIV-Infected Patients is Greatly Augmented by the Work of CJI Contractors, but Almost No Discharge Planning Occurs for HCV-Infected Patients Unless They are Currently in Treatment- The CJI contractors provided transitional planning for 641 HIV-infected patients in 2009, representing 64% to 80% of an estimated 780 to 1,000 persons leaving prison during that year. These services are important in developing effective discharge - 7 -

10 plans and ensuring continuity of care, and should be made available to all HIV-infected persons leaving prison. No comparable system exists for HCV-infected patients unless they are currently on HCV therapy. Many HCV-infected patients leave prison without adequate documentation of their condition and treatment, and without any discharge plan or referral to a community provider. AIDS INSTITUTE ACTIVITIES RELATED TO DOCCS AI s Criminal Justice Initiative Provides Important Supportive Services for HIV-Infected DOCCS Patients, but Not All Patients are Receiving CJI Services- The 14 CJI contractors in 2011 provided five types of HIV services in DOCCS facilities: prevention education; training of peer educators; counseling and testing; support services for infected and affected individuals; and HIV/AIDS specific transitional planning. In 2011, most but not all prisons received some or all of the five services offered by the CJI contractors. The number and percent of DOCCS prisons not covered for each type of service were: HIV prevention-3 (5%); HIV peer training-15 (26%); HIV counseling and testing-12 (21%); HIV support services-18 (31%); and transitional services- 7 (12%). Unfortunately, only approximately 10% of the known HIV population received CJI counseling services in 2009, the latest year of data received. CJI contractors provided transitional services to 641 individuals in 2009, which would represent discharge planning for about 64% to 80% of identified HIV patients leaving prison. CJI contractors provided assistance with adherence to treatment to only 110 patients, or 11%, of the nearly 1,000 patients on ART. CJI Contractors Provide Educational Services to the Prison General Population, including Conducting HIV Peer Educator Training- In 2009, CJI contractors provided prevention services to 5,000 persons and may have provided general health information to as many as 30,000, but it unclear how comprehensive or effective these educational programs were. While 742 persons participated in CJI Peer Educator Programs in 2009, peer educators are not consistently integrated into HIV education in all state prisons, and few are given paid positions to educate the general prison population. Peer HIV educators should be integrated into general prison programs because many in the prison population are reluctant to attend HIV-specific activities due to concerns about stigma and lack of confidentiality. AI s Positive Pathways Project is Designed to Increase the Number of HIV-Infected Individuals Identified by DOCCS, Encourage Infected Patients to Enter Care and Facilitate Continuity of Care When Patients Leave DOCCS- The federally funded, three-year Positive Pathways Project is a pilot program at 18 prisons primarily using CJI contractors to educate security and health staff and the incarcerated population about the benefits of HIV testing and treatment and to sensitize staff about barriers to patients agreeing to be tested or enter care due to issues of stigma, lack of confidentiality and skepticism about prison healthcare. The program includes an effort to have interventions with any person about to leave prison whose HIV status is unknown, to urge them to be tested. Finally, it includes a six-month postrelease support program to get formerly incarcerated HIV-infected persons to enter and stay in community care. We strongly support this program but urge that peer educators be included and that the testing intervention not be limited only to those about to be released from incarceration. AI Hepatitis Continuity of Care Program for Recently Released Persons on HCV Therapy Appears Useful but is Only Assisting a Small Number of HCV-Infected Persons- Based on anecdotal information from prison visits, staff who have used the program generally report - 8 -

11 success in getting individuals enrolled in community care, but our impression is that this initiative has had limited impact, primarily because DOCCS is treating so few patients and the vast majority of them have completed treatment prior to release. AI MONITORING UNDER THE DOH OVERSIGHT LAW AI Monitoring under the DOH Oversight Law Should be Adequately Funded and Expanded to More Prisons- DOH has not apparently requested funding for AI to perform its duties under Section 206(26) of the Public Health Law, and, therefore, AI has insufficient resources to adequately perform its legislative mandate. Current efforts to review only four male prisons, representing less than 8% of the prison population, is not adequate to assess whether DOCCS is complying with the community standards of care for HIV and HCV. AI has Failed to Provide Adequate Notice to the Public or to Properly Engage the Public in the Review Process- Prior to starting its 2013 review of HIV/HCV care, AI only placed notices of its intentions on bulletin boards in the prisons and has generally failed to adequately inform currently and formerly incarcerated persons, their families, community providers, and prison and health advocates about the review process. The agency has not given sufficient details about the scope and procedures being employed to investigate care, nor provided sufficient time for those interested in submitting comments to gather the necessary information and prepare their submissions. After objections from the CA and other outside agencies, AI reopened the review process but did not adequately publicize this fact or provide sufficient time for comments. AI s Inclusion of Medical Record Reviews by an Independent Agency is a Positive Development, but the Review Instruments are Not Comprehensive and Additional Data Must be Reviewed to Identify Potential Barriers to Effective Care- The instruments used by IPRO for HIV and HCV care are not sufficient to identify the potential problems in this care. The six DOCCS HIV indicators utilized are not comparable to the 15 AI performance measures in the HIV-specific ehivqual instrument or the 40 measures in the two ehivqual instruments that are non-hiv-specific but address general issues of screening, vaccination, management and treatment, all crucial to the health of HIV-infected patients. The two HCV indicators being assessed by IPRO fail to address the primary concerns of HIV-infected patients concerning evaluation of eligibility for treatment and provision of treatment to eligible patients. Finally, it is unclear what additional documentation the AI monitoring team reviewed, but it should at least assess system-wide data on staffing, testing, diagnostic tests, utilization of specialty care services, number of persons receiving treatment and treatment outcomes. DOH Oversight can be a Valuable and Important Tool to the State in Improving Continuity of Care for Patients Leaving DOCCS and in Developing and Implementing Initiatives to Include Formerly Incarcerated Persons in the New Healthcare Systems being Developed through NYS Medicaid Redesign and the Federal Affordable Care Act- Because AI is so familiar with community-based HIV and HCV resources, the AI DOH oversight review team, through its monitoring of prison healthcare, can identify barriers and opportunities to improve the transition of DOCCS patients from prison medical services to community-based care. Also, the DOH oversight process should help inform state officials about the opportunities and challenges of integrating formerly incarcerated persons into the new healthcare systems developing from Medicaid Redesign and ACA implementation. AI monitoring staff will have useful information about the medical needs of released persons, medical information necessary - 9 -

12 for assessing what healthcare systems would be appropriate for this population, how HIV care and discharge planning can be replicated to other chronic conditions, and the type and quality of medical information in DOCCS records that could be provided to community health providers. PREVENTION PROGRAMS FOR HIV AND HCV DOCCS and AI Need to Enhance HIV and HCV Prevention Efforts in the Prisons- In 2009, the CJI contractors provided individual risk-reduction counseling to more than 1,500 clients, individual sessions about prevention and harm reduction to several hundred persons, and group prevention education to almost 4,000 individuals. These interventions do not necessarily include peer educators, who could significantly enhance these programs effectiveness. HIV treatment has also been recognized as a prevention measure, which needs to be reinforced with the prison population and HIV-positive persons. Finally, both DOCCS and AI need to expand their prevention program to include harm-reduction education and the use of prophylaxis devices, such as condoms, to reduce the spread of HIV and other STDs in prisons and in the community. DOCCS and AI Should Endorse the Proposed Legislation in the Senate and Assembly (S3566A/A05340), which Would Mandate a Comprehensive HIV/HCV Prevention Program in Each Prison- This legislation would direct DOCCS and DOH to develop and implement HCV, HIV, and other sexually transmitted infection (STI) prevention measures, including education, group and individual counseling, outreach to the incarcerated population, harm reduction, discharge planning, testing, and availability of prophylactic devices. MAJOR RECOMMENDATIONS Recommendations for the Department of Corrections and Community Supervision Substantially increase the percentage of the HIV and HCV population identified as HIV/HCV-infected by analyzing current testing programs for reasons people get tested or not, publicly reporting annual assessments of the number of HIV and HCV tests at each prison, implementing programs that are more effective at reaching persons most at risk for HIV and HCV, taking steps to address issues of stigma and confidentiality and improve quality of care and discharge planning, and exploring the possibility of HIV opt-out testing. Enhance the role played by peers, contractors and supplemental programs, including integrating and increasing the role of HIV/HCV peer educators, expanding the AI Positive Pathways program to other prisons, and facilitating more CJI contractor programs. Implement an HIV and HCV prevention program based on education and harmreduction techniques, and support current legislation (S3566A/A05340) to that end. Increase funding for prison healthcare for both personal and non-personal services, including an enhancement of pay scales for nurses and pharmacists. Enhance medical staffing by filling all vacant positions expeditiously, developing consistent staffing patterns across DOCCS prisons, augmenting medical staff training, and fostering more staff to become HIV specialists

13 Improve routine medical care by ensuring, for both sick-call nurses and clinic providers: access to care, timeliness of services, timely follow-up, confidentiality, respectful and caring interactions with patients, and quality medical care that meets community standards. Develop a chronic disease care system to improve care by assigning a regular clinic provider to each chronically ill patient, utilizing a chronic care coordinator for each chronic condition, and implementing a computerized system to schedule and monitor chronic care. Expand the DOCCS pharmacy system to include every prison by enhancing the pay scale for pharmacists, hiring pharmacists at prisons that had closed their pharmacy, distributing prescriptions to prisons without a pharmacy through the DOCCS Central Pharmacy program, and installing the DOCCS computerized medical system at every prison. Enhance DOCCS discharge planning to ensure continuity of care upon release by developing a plan to enroll all chronically ill patients in Medicaid prior to release, and ensuring each chronically ill patient is discharged with medical records that adequately describe his/her medical condition, course of treatment and treatment plan. Improve HIV care for all HIV-infected patients by publishing new DOCCS HIV Practice Guidelines, enhancing HIV identification at prisons with currently low rates, increasing ART at prisons with currently low treatment rates, and ensuring timely access to ID specialists and prompt implementation of ID recommendations. Enhance discharge planning for HIV-infected patients by ensuring that all HIV-infected patients being discharged are referred to a facility CJI contractor, given comprehensive medical summaries, and receive prescriptions and 30-day supplies of their medications. Enhance the identification and treatment of HIV-infected women by expanding the population tested for HIV, increasing the role of peer educators in outreach to the prison population, increasing HIV outreach and education, which should include the benefit of treatment in prison, expanding HIV education in general women s health groups, and incorporating trauma-informed principles in all healthcare outreach and HIV care Improve HCV care for all HCV-infected patients by expanding HCV treatment, timely introducing new therapies as they are developed, enhancing identification and testing for chronic infection of HCV-infected persons, evaluating HCV-infected patients who were non-responders, relapsed, or failed to complete previous treatment for recent and future HCV therapies, and publicly reporting data on the number of HCV-infected persons at each prison who were evaluated for HCV therapy, were offered therapy, and initiated therapy. Enhance discharge planning for all HCV-infected patients by providing a comprehensive medical summary, information on community HCV treatment resources, and arrangements for continuity of care for those who need active treatment and/or monitoring

14 Enhance the identification and care of HCV-infected women by evaluating all HCVinfected women for chronic infections and eligibility for HCV treatment, increasing the number of HCV-infected women offered HCV therapy, incorporating trauma-informed principles in all healthcare outreach and HCV care, and improving discharge planning for HCV-infected women returning home. Recommendations for NYS Department of Health and the AIDS Institute Improve HIV testing program in NYS prisons by conducting and publicizing an HIV epidemiology study of newly admitted persons to DOCCS, expanding data obtained from incarcerated patients seeking HIV testing, assessing why DOH testing in DOCCS identifies so few HIV-infected people, and utilizing HIV peer educators in the DOH testing program. Enhance the AI Criminal Justice Initiative by ensuring all five CJI contractor services are provided at each facility needing them; working with DOCCS to expand opportunities for CJI peer training program graduates in general prison programs; enhancing the effectiveness of HIV counseling, testing and identification of HIV-infected patients; expanding the type and number of prison programs that include CJI education on HIV and HCV; and enhancing CJI discharge planning and publicly reporting on this program s effectiveness. Expand the Positive Pathways Project by deploying the project at more facilities, publicizing the curriculum for security and medical staff trainings, and encouraging DOCCS and CJI to adopt project materials and activities that prove effective. Enhance the scope and effectiveness of the AI HCV Continuity of Care Program by annually assessing the effectiveness of the program and implementing measures to increase utilization of the service and improve continuity of care outcomes for those who use it. Enhance the AI monitoring of the DOH Oversight Law for HIV/HCV care by securing adequate state funding for monitoring duties; annually reviewing at least 20% of the prison population; providing adequate notice to the public prior to initiating the review and specifying the prisons and scope of review; enhancing the indictors used in the medical chart review; including system-wide and facility-specific data analyses of important care indicators, such as staffing, testing, infection rates, monitoring activities, access to specialists, and treatment rates and outcomes; assessing continuity of care for patients leaving DOCCS; and engaging in the state efforts to include current and formerly incarcerated persons in the expanded healthcare systems being developed by Medicaid Redesign and the Affordable Care Act. Expand HIV and HCV prevention and harm reduction programs by supporting prevention legislation (S3566A/A05340), expanding the CJI curriculum to include harmreduction measures, and continuing to urge DOCCS to expand access to condoms

15 SECTION 1 OVERVIEW OF HIV/HCV CARE IN DOCCS PRISONS The prison population in DOCCS suffers from very high rates of HIV and HCV, and the Department has difficulty identifying all those individuals in its custody who are infected and/or engaging these persons in care. Moreover, the quality of care varies significantly throughout DOCCS, in part due to limited medical resources at some facilities and apparent limitations in the training, skill, and/or commitment of medical staff to provide timely and effective care to every patient. We must emphasize that at some prisons, it appears that patients infected with HIV and/or HCV are closely monitored, are receiving timely and appropriate care and seem to have few complaints about the care they are receiving. In contrast, at other facilities, there is less access to care due to understaffing, patients have much more limited access to specialty care and other services, and patients express significant dissatisfaction with the quality of care they are receiving. Given this variability, it is crucial that each facility be examined to identify the barriers to quality care, both from a resources perspective and an assessment of the quality of care provided by each healthcare person servicing this patient population. As discussed below, New York prisons remain the epicenter of HIV in the US prison system. NY prisons also incarcerate more than 6,000 patients infected with HCV. More than 95% of these patients will return to their communities, and the effectiveness of DOCCS efforts to provide meaningful patient education, adequate testing and care, broader prevention programs, and improved discharge planning and linkages to community healthcare will determine not only the individual patient s medical future but also the health of their communities. We will focus this memorandum on assessing seven areas related to the care of HIVand HCV-infected patients: (1) HIV and HCV seroprevalence in DOCCS facilities; (2) HIV and HCV testing of the prison population and identification of infected persons in our prisons; (3) medical staffing and resources for healthcare within the prisons; (4) general healthcare in DOCCS, including patients assessment of access to and quality of care provided by clinic and nursing staff, provision of medications, access to specialists and discharge planning; (5) chronic care for HIV- and HCV-infected patients; (6) AI activities related to HIV/HCV care in state prisons and monitoring of the DOH Oversight Law; and (7) HIV and HCV prevention mechanisms. In making these findings, we will be referring to system-wide data, information obtained from specific prison visits, and surveys submitted to us from HIV- and HCV-infected incarcerated patients. Prevalence of HIV and HCV in the DOCCS The New York prison system has one of the highest concentrations of HIV-infected persons of any state prison system in the country. It is difficult to estimate precisely the number of individuals in DOCCS who are infected since DOCCS does not issue any estimates of HIV prevalence for its prisons. The latest available data for HIV-infected patients in the state prisons is contained in the U.S. Department of Justice, Bureau of Justice Statistics report HIV in Prisons, , 1 in which it was reported that there were 3,080 HIV-infected persons in New York prisons as of year-end If the decline in the 1 Maruschak, Laura. HIV in Prisons, Bulletin (NCJ ): U.S. Department of Justice, Office of Justice Programs, Bureau of Justice Statistics, 2012: Table 1, p

16 number of HIV-infected patients in our state prisons contained in the BJS report continued, one could estimate that there are approximately 2,700 to 3,000 HIV-positive persons currently in DOCCS. Although New York s number of HIV-infected persons in prison has dropped, it is still the highest number and percentage (17%) of any state in the country. Additional information about the HIV-infected population is also available from New York State Department of Health, Bureau of HIV/AIDS Epidemiology (BHAE) studies of newly admitted persons to DOCCS during the past 21 years, from 1988 through A preliminary analysis of data from 2009 demonstrates that the rate of HIV-infection for newly admitted men to DOCCS has stabilized during the past four years at approximately 3% to 4%, but for newly admitted women, the infection rate dropped from almost 11% during 2003 through 2007 to 5% in Although these absolute rates cannot be projected for the entire prison population due to oversampling at smaller admission centers and other differences between the BHEA test sample and the entire prison population, several findings from that study are significant in evaluating the HIV-infected prison population. First, the infection rate for both men and women and for all racial/ethnic groups has declined and has appeared to stabilize for men in recent years. Second, the rate of infection for women has consistently been more than double that for men, except for the most recent unusual decline in Third, the HIV-infection rate for persons who report injection drug use (IDU) has significantly dropped throughout the 20-year period, but the HIV-infection rate is still two to three times higher than for non-idu individuals. The infection rate for hepatitis C in state prisons is even higher than for HIV. Again, definitive numbers are not available and must be derived from studies of newly admitted persons to DOCCS. For newly admitted males entering DOCCS, the HCV seroprevalence rates have remained somewhat stable from 2005 through 2009 within the range of 9.5% (2009) and 11.2% (2007). During this same time period, the HCV-infection rate for newly admitted women has dropped from 19.4% in 2005 to 14.6% in There were significant differences in the HCV-infection rate by age groups, with 40 years and older individuals having a positivity rate of 20.5%, persons years old with a rate of 9.4% and those 29 and younger testing positive at only 3.7%. The race/ethnicity groups also have different infection rates; Latinos had the highest HCV-infection rate (15.3%), white people were at 14.8%, and black people had the lowest HCV-infection rate at 6.1%. Among individuals who reported injection drug use, there was an infection rate of 62.6%. Because the BHAE study sample does not match the current prison population, it is difficult to project an estimate of the total HCV prison population from these studies. But using the race and other demographic data from the BHAE studies, we would conservatively estimate that 6,000 to 6,600 persons currently in our state prisons have HCV, although the actual number could be substantially higher. We urge DOCCS, with assistance from the DOH, to develop a model to estimate the prevalence of HCV in the prisons and to publish this data in a form that is available to the public. Prevalence data is essential if DOCCS and the state are going to develop meaningful plans for identifying infected individuals and projecting budget and staffing needs to care for persons with chronic HCV-infections. Identification and Testing for HIV and HCV in DOCCS The number of incarcerated persons known by DOCCS to be infected with HIV and/or HCV varies substantially from the estimated number of individuals infected with