Implementing Updated Recommendations on Hepatitis C Virus Screening: Translating Federal Guidance Into State Practice Erika G. Martin, PhD, MPH; Amanda M. Norcott, MPA; Hina Khalid, MPP; Daniel A. O’Connell, MA, MLS rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Context: Chronic viral hepatitis is a leading infectious cause of death. The Centers for Disease Control and Prevention (CDC) released updated recommendations for hepatitis C virus testing, including recommending that all individuals born between 1945 and 1965 be tested once. States’ consistency with these national testing guidelines is unknown. Objective: To evaluate the extent to which state health departments have current hepatitis C virus testing recommendations listed on their Web sites, consistent with national guidelines. Design: The CDC guidelines were reviewed to identify the risk groups recommended for or against testing. State health department Web sites (50 US states, the District of Columbia, and Puerto Rico) were then systematically reviewed to classify whether, for each risk group, testing is recommended, not recommended, or with unclear recommendations. Main Outcome Measure: States’ consistency with national recommendations for each risk group mentioned by the CDC. Results: Among the risk groups that the CDC currently recommends for testing, 50% of states updated their Web sites to include individuals born between 1945 and 1965. All states recommend testing current or former injection drug users, but only 58% recommended testing HIV-positive individuals. Among the risk groups for which the CDC has issued uncertain recommendations, states most frequently recommended testing individuals with tattoos or body piercing done with unsterile materials (46%) or with a history of multiple sex partners (31%). Conclusions: There is substantial variation in state Web sites’ consistency with the CDC guidelines. The public health importance of risk factors is not associated with their inclusion in Web content. Improving the uptake of these recommendations and the manner in which they J Public Health Management Practice, 2015, 00(00), 1–6 C 2015 Wolters Kluwer Health, Inc. All rights reserved. Copyright
are conveyed to the public are critical to increasing diagnoses and averting new infections. KEY WORDS: guidelines, health policy, hepatitis C, screening
The Centers for Disease Control and Prevention’s (CDC’s) updated guidelines for hepatitis C virus (HCV) testing recommend that all adults born between 1945 and 1965 be tested once, regardless of other risk factors.1,2 This cohort is at increased risk due to exposures before the implementation of HCV control measures such as testing the US blood supply, and three-fourths of all cases of HCV infection and HCVassociated mortality are in this group.1,3 Chronic viral hepatitis affects 3.2 million Americans4 and is a major cause of liver cirrhosis and liver cancer.5,6 HCV is a leading infectious cause of death in the United States,7 and the age-adjusted mortality rate for HCV (4.58 deaths Author Affiliations: The Nelson A. Rockefeller Institute of Government, State University of New York, Albany (Dr Martin); Rockefeller College of Public Affairs and Policy, University at Albany–State University of New York, Albany (Dr Martin and Mss Norcott and Khalid); and AIDS Institute, New York State Department of Health, Albany (Mr O’Connell). The authors are grateful to Bruce Schackman, for helpful comments on the research design and an earlier draft of the manuscript, Matthew St. Pierre, for conducting a second review of state guidelines, and Michele Charbonneau, for assistance with the map. The views expressed in this article are those of the authors and not those of the New York State Department of Health. The authors did not receive funding for this work, and have no conflicts of interest to declare. Correspondence: Erika G. Martin, PhD, MPH, Rockefeller College of Public Affairs and Policy, University at Albany, 1400 Washington Ave, Milne 300E, Albany, NY 12222 ([email protected]). DOI: 10.1097/PHH.0000000000000266
1 Copyright © 2015 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
2 ❘ Journal of Public Health Management and Practice per 100 000 people) is higher than that for HIV (4.16 deaths per 100 000 individuals).8 Advances in drug therapies make it possible to cure most individuals living with HCV infection with fewer side effects, although identifying and subsequently treating patients are challenging.9 Of the estimated 3.2 million individuals living with chronic HCV infection in the United States, only 5% to 6% have been successfully treated.10 The CDC’s recommendations are not a mandate but are important for shaping policy and practice. They may affect funding priorities and population health indicators that health departments report on funding applications. They may motivate states to develop relevant laws and regulations, such as New York’s recent laws mandating the offer of HIV and HCV tests. Aligned recommendations by the CDC and other national bodies such as the US Preventive Services Task Force can encourage medical societies and other professional associations to issue new practice recommendations and reinforce the importance of HCV testing.11 Policy implementation may be thwarted at multiple levels. Under the US federalist system, only states have the constitutional authority to codify these recommendations into law or regulatory procedure. Although federal agencies can employ financial incentives such as funding public health activities or making funding conditional on outcomes, states cannot be forced to adopt screening guidelines or mandate implementation among practitioners. This can cause considerable variation in state practices. Two years after the CDC released its updated recommendations on HIV testing in 2006, one-third of states had statutes that were inconsistent with national recommendations.12 Beyond state policies, expanded screening requires that medical providers offer and patients accept testing. In the case of HIV infection, barriers to physician offers include policies (burdensome consent processes, pretest counseling requirements, and inadequate reimbursement), logistics (insufficient time, competing priorities, and language), and educational (lack of patient acceptance and lack of training); many of these factors are relevant to HCV testing. Barriers to patients accepting HIV testing include fears of adverse consequences, limited expected benefits, incorrect perceptions of being at risk, cultural norms about testing, privacy and confidentiality concerns, cost, inconvenience, and isolation.13 Many of these concerns have been discussed by injection drug users considering HCV testing.14 In the 2 years following the updated HCV testing recommendations, we documented the recommendations that state health departments present publicly on their Web sites. Although these are not the official state guidelines, they are the public manifestation of recommendations to practitioners and the public. We evaluated the extent to which they updated their Web
content to be consistent with the CDC guidelines, variation across states, and the level of detail on their Web sites.
● Methods The CDC recommendations on HCV testing1,15,16 were used to identify important risk groups. They were categorized by whether testing is recommended, testing is not recommended, or testing recommendations are unclear. Web sites from the departments of health of 50 US states, the District of Columbia, and Puerto Rico were reviewed from March to May 2014 to document their testing recommendations for each group. It was also noted whether state Web sites mention HCV guidelines or a state plan for HCV, provide separate HCV Web sites or links for health care professionals, and include recommendations and information about HCV counseling. Data are summarized as the percentage of state Web sites recommending testing for each group and with other information such as strategic plans. In addition, we grouped states that recommended routine testing for adults born between 1945 and 1965 and HIV-positive individuals. These risk groups are particularly important from a public health perspective because they currently represent a high burden of cases.
● Results Recommendations on specific risk groups The Table displays the fraction of state Web sites recommending testing for each risk group. Among the risk groups that the CDC current recommends for testing, only 50% of states updated their guidelines to include adults born between 1945 and 1965. All states (100%) recommend testing among current and/or former injection drug users; only 58% recommended testing among HIV-positive individuals. Almost all states (96%) recommend testing after workplace exposures. However, there were differences in state recommendations for patients with health care exposures or having persistent abnormal alanine aminotransferase levels. A quarter of states (28%) recommend testing nonsexual household contact, although the CDC does not recommend testing this group. Among the risk groups for which the CDC has issued uncertain recommendations, states most frequently recommended testing among persons with tattoos or body piercing done with unsterile materials (46%), persons with a history of multiple sex partners (31%) or sexually transmitted
Copyright © 2015 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
Hepatitis C Virus Screening Recommendations
❘ 3
TABLE ● Percentage of Web Sites from US States, District of Columbia, and Puerto Rico Recommending HCV Testing for Specific Risk Groups Mentioned in the CDC Guidelinesa qqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqq
Risk Group
CDC Testing Recommendation
States Recommending Testing on Web Sites, %
States With Uncertain Recommendations on Web Sites, %
Yesb Yes Yes Yes No No No
50 58 85 63 0 28 0
2 0 0 0 0 0 0
Yes Unclear Unclear
100 8 2
0 4 4
Unclear
46
2
Unclear Unclear Unclear
31 13 27
2 4 6
Yes Yes Yes Yes
88 87 52 96
0 0 0 0
Yes
96
0
No Unclear
2 6
0 2
Population-based risks Born between 1945 and 1965 Infection with HIV Children born to HCV-positive women Persistently abnormal alanine aminotransferase levels Pregnant women Household (nonsexual) contacts of HCV-positive persons General population Behavioral risks Current and/or former injection drug users Intranasal and noninjecting illegal drug users Persons with a history of tattooing or body piercing done with sterile materials or unspecified Persons with a history of tattooing or body piercing done with unsterile materials Persons with a history of multiple sex partners Persons with a history of sexually transmitted diseases Long-term steady sexual partners of HCV-positive persons Health care exposures Received clotting factor concentrates produced before 1987 Ever on long-term hemodialysis Received blood from a donor who later tested positive for HCV Received a transfusion of blood, blood components, or an organ transplant before July 1992 Health care, emergency medical, and public safety workers after needlesticks, sharp object injuries, or mucosal exposures to HCV-positive blood Health care, emergency medical, and public safety workers Recipients of transplanted tissue (eg, corneal, musculoskeletal, skin, ova, sperm) Abbreviations: CDC, Centers for Disease Control and Prevention; HCV, hepatitis C virus. a The authors’ review of state department of health Web sites from March to May 2014. b Age cohort risk group added to the most recent CDC testing guidelines in 2012.
diseases (13%), and long-term steady sexual partners of HCV-positive persons (27%). The Figure illustrates state Web sites’ recommendations for adults born between 1945 and 1965 and HIV-positive individuals. One-third of states (31%) did not recommend routinely screening either group, whereas just over two-fifths (40%) recommended routinely screening both groups.
separate Web sites or links for health care workers, although most states did not have additional information on HCV counseling training or links to relevant Web sites about how to conduct HCV counseling (38%). State Web sites commonly recommended posttest counseling (62%), half (50%) recommended both pre- and posttest counseling, and 35% do not recommend either.
Other Web site features related to HCV guidelines
● Discussion
Two-thirds of state Web sites (67%) had a strategic, harm reduction, or prevention plan, and 90% included a Web link to the CDC Web site. Two-thirds (63%) had
HCV treatment is dynamic, with rapidly evolving treatments.9,17 Increasing the proportion of
Copyright © 2015 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
4 ❘ Journal of Public Health Management and Practice FIGURE ● States’ Consistency With Current CDC Guidelines on HCV Testing Risk Groupsa
qqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqq WA
NH MT
VT
ND
ME
MN
OR
MA
ID
WI
SD
WY
UT
CA
RI
MI PA
IA
NE
NV
NY
IL
CO KS
NJ
IN WV
MO
OK
NM
NC
MD
SC
AR MS
TX
DE DC
VA
KY
TN AZ
CT
OH
AL
GA
LA
AK FL
Population p Risk Neither HIV+ only Baby boomer only HIV+ and baby boomer
HI
PR Abbreviations: CDC, Centers for Disease Control and Prevention; HCV, hepatitis C virus. a This figure displays the states that explicitly describe a recommendation to offer an HCV screening test to all adults born between 1945 and 1965 and HIV-positive individuals on their state department of health Web sites. Baby boomers were recently added to the CDC’s updated HCV testing guidelines. These 2 population risk groups are important because they are associated with a high number of cases.
HCV-infected individuals who are aware of their infection and averting new infections are major goals of the national Viral Hepatitis Action Plan.7 Recognizing the critical role that states play in hepatitis surveillance, treatment, and prevention,3 we focused on how health departments from the 50 US states, the District of Columbia, and Puerto Rico have publicly presented HCV screening information on their Web sites two years after the CDC’s updated guidelines on testing among adults born between 1945 and 1965. There were several areas where state Web sites were inconsistent with the CDC recommendations. Notably, only 50% of states’ guidelines include adults born between 1945 and 1965. The public health importance of risk factors is not perfectly correlated with their inclusion in state guidelines. For example, all states recommend testing current and/or former injection drug users but only 58% recommend testing individuals living with HIV, although one-third of people living with HIV are coinfected with viral hepatitis and coinfection accelerates disease progression.7 In addition to inconsistencies between recommendations on state Web sites and CDC guidelines, there were internal inconsistencies within states’ Web content. Although most
states (90%) linked to the CDC Web site, only one-third had guidelines that were fully consistent with national recommendations. We have several potential explanations for different levels of consistency across risk groups listed on states’ Web sites. The low inclusion of adults born between 1945 and 1965 could be due to time lags for federal guidelines to be interpreted and subsequently adopted by states. The perfect consistency between state and federal guidelines for workplace exposures could reflect additional mandates on occupational risks from the Occupational Safety and Health Administration18 and lobbying by professional associations representing health care workers. Health care exposure risks have a “multiplier effect,” in which improper sterilization of sharps in one facility or a known infection among a donor could trigger state health departments to require that all potentially infected individuals be notified. This could also contribute to states’ perfect consistency for workplace exposures, although it is surprising that there is lower consistency for recommendations to screen individuals who received blood from donors who later tested positive for HCV (52%). There has been rigorous screening for HCV in the US blood
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Hepatitis C Virus Screening Recommendations
supply since 1992, so this risk factor may be unimportant in practice. Staff turnover and limited public health funding for HCV, disease awareness and activism, and political attention may have lowered state health departments’ ability to update their HCV screening guidelines and the information displayed on their Web pages. In the case of HIV, strong advocacy groups lobbied for the creation of and continued funding for the Ryan White HIV/AIDS Program, a stand-alone program dedicated to HIV care.19,20 Other federal agencies including the Substance Abuse and Mental Health Services Administration and the National Institutes of Health earmark funding for HIV. Social marketing campaigns for HIV21 and Ryan White HIV/AIDS Program infrastructure raised disease awareness and generated sophisticated professional associations such as the National Alliance of State & Territorial AIDS Directors.20 In contrast, as a “silent epidemic,” HCV activism is typically supported by HIV advocates with competing priorities and there is limited funding for state and territorial hepatitis programs.3 Not all states receive CDC funding to provide core public health prevention services such as HCV testing. Health departments have few HCV resources, with 89% reporting limited funding for HCV testing and 84% reporting no funding for referral and linkage to medical care.22 Consequently, while some states fund local service providers to conduct HCV testing, others provide indirect support such as technical assistance, laboratory services, and testing kits to local service providers. Finally, because many behavioral risks for HCV infection are stigmatized, states with fewer injection drug users or else with lower legal support for harm reduction strategies such as syringe exchanges23 may not prioritize updating their HCV guidelines. Several changes to the policy environment may increase states’ consistency with federal HCV screening guidelines and subsequent screening rates. First, states may learn from their experiences with HIV testing guidelines. For example, when New York drafted a law requiring the offer of HCV tests in routine medical care settings, policy makers used the recent HIV testing law as a guide. Second, the US Preventive Services Task Force issued new recommendations on HCV screening, assigning a grade B recommendation for screening among high-risk individuals, including onetime screening in the 1945 to 1965 birth cohort.24 This is a critical development because public and private health insurance plans often follow grade A and B recommendations.25 The importance of standard federal recommendations for testing and referral to care was noted in the Viral Hepatitis Action Plan, as inconsistent recommendations can be confusing for clinicians and a barrier to testing initiatives.7 Third, there is
❘ 5
better awareness of the interrelationship among HCV, HIV, and sexually transmitted infections, as demonstrated by the CDC’s Program Collaboration and Service Integration (PCSI) strategic priority to strengthen collaborations and integrate services across diseases.26 Although PCSI does not increase funding, it facilitates health departments’ abilities to use funds for broader purposes serving this disease cluster. In addition to PCSI, the CDC recently launched a new “Know More Hepatitis” social marketing campaign and funding for viral hepatitis testing.3 Finally, some advocacy groups have a new focus on HCV issues, such as New York’s Voices of Community Activists and Leaders (VOCALNY), formerly the NYC AIDS Housing Network. This study has several limitations that suggest future research. It is cross-sectional and does not capture dynamic changes. State departments of health may contract nongovernmental organizations to conduct HCV testing and set priorities in these contracts, or else an HCV testing guidance may not be posted electronically. Monitoring department of health Web sites is an imperfect measure of states’ recommendations. However, these recommendations are likely to be implemented in practice because they are readily available to the public. Future work could enumerate state laws and regulations related to HCV testing and compare how they match those described on state Web sites. Qualitative research could elucidate how departments of health make decisions on testing recommendations. Overall, these findings suggest a couple of recommendations for practice. To reduce implementation time lags, the CDC could provide more technical assistance to state program directors to implement national guidelines and foster the exchange of information through professional networks such as the National Alliance of State & Territorial AIDS Directors. In our experience, state departments of health are more proactive with issues that are immediate emergencies (such as the recent Ebola outbreak) or else have funding. Consequently, translating federal guidance into state practice will require increased funding for viral hepatitis. Although there is funding for surveillance and viral hepatitis coordinators, this falls short of HIV testing, which has a prevention funding stream through the CDC and a care stream through the Health Resources and Services Administration. We predict that additional funding dedicated to viral hepatitis will be critical to reducing the epidemic. REFERENCES 1. Centers for Disease Control and Prevention. Recommendations for the identification of chronic hepatitis C virus infection among persons born during 1945-1965. http://www .cdc.gov/mmwr/preview/mmwrhtml/rr6104a1.htm. Published 2012. Accessed July 30, 2013.
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6 ❘ Journal of Public Health Management and Practice 2. Smith BD, Morgan RL, Beckett GA, Falck-Ytter Y, Holtzman D, Ward JW. Hepatitis C virus testing of persons born during 1945-1965: recommendations from the Centers for Disease Control and Prevention. Ann Intern Med. 2012;157(11):817822. 3. Association of State and Territorial Health Officials. State public health role in addressing hepatitis. http://www .astho.org/Programs/Infectious-Disease/Hepatitis-HIV-STDTB/Viral-Hepatitis/State-Public-Health-Role-in-AddressingHepatitis. Published 2013. Accessed May 10, 2013. 4. Valdiserri R. FDA approves second new treatment for hepatitis C. blog*AIDS*gov. http://blog.aids.gov/2011/05/ fda-approves-second-new-treatment-for-hepatitis-c.html. Published 2011. Accessed September 2, 2014. 5. US Department of Health and Human Services. Combating the silent epidemic of viral hepatitis: action plan for the prevention, care and treatment of viral hepatitis. http:// www.hhs.gov/ash/initiatives/hepatitis. Published 2011. Accessed December 18, 2014. 6. Hart-Malloy R, Carrascal A, Dirienzo AG, Flanigan C, McClamroch K, Smith L. Estimating HCV prevalence at the state level: a call to increase and strengthen current surveillance systems. Am J Public Health. 2013;103(8):1402-1405. 7. Wise M, Bialek S, Finelli L, Bell BP, Sorvillo F. Changing trends in hepatitis C-related mortality in the United States, 1995-2004. Hepatology. 2008;47(4):1128-1135. 8. Ly KN, Xing J, Klevens RM, Jiles RB, Ward JW, Holmberg SD. The increasing burden of mortality from viral hepatitis in the United States between 1999 and 2007. Ann Intern Med. 2012;156(4):271-278. 9. Liang TJ, Ghany MG. Current and future therapies for hepatitis C virus infection. N Engl J Med. 2013;368(20):1907-1917. 10. Holmberg SD, Spradling PR, Moorman AC, Denniston MM. Hepatitis C in the United States. N Engl J Med. 2013; 368(20):1859-1861. 11. Valdiserri R. USPSTF releases hepatitis C screening recommendations. blog*AIDS*gov. http://blog.aids.gov/2013/06/ uspstf-releases-hepatitis-c-screening-recommendations.html. Accessed September 25, 2014. 12. Mahajan AP, Stemple L, Shapiro MF, King JB, Cunningham WE. Consistency of state statutes with the Centers for Disease Control and Prevention HIV testing recommendations for health care settings. Ann Intern Med. 2009;150(4):263269. 13. Vermund SH, Wilson CM. Barriers to HIV testing—where next? Lancet. 2002;360(9341):1186-1187. 14. Jordan AE, Masson CL, Mateu-Gelabert P, et al. Perceptions of drug users regarding hepatitis C screen-
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ing and care: a qualitative study. Harm Reduct J. 2013; 10:10. Recommendations for Prevention and Control of Hepatitis C Virus (HCV) Infection and HCV-Related Chronic Disease. Atlanta, GA: Centers for Disease Control and Prevention; 1998: 1-39. http://www.cdc.gov/mmwr/preview/mmwrhtml/ 00055154.htm. Accessed July 20, 2013. Centers for Disease Control and Prevention. DVH—testing recommendations for chronic hepatitis C virus infection. http://www.cdc.gov/hepatitis/hcv/guidelinesc.htm. Accessed October 18, 2014. Drenth JPH. HCV treatment—no more room for interferonologists? N Engl J Med. 2013;368(20):1931-1932. US Department of Labor. Healthcare Wide Hazards. Needlestick sharps injuries. https://www.osha.gov/SLTC/etools/ hospital/hazards/sharps/sharps.html. Published 2013. Accessed April 2, 2013. Epstein S. Impure Science: AIDS, Activism, and the Politics of Knowledge. Oakland, CA: University of California Press; 1996. Martin EG, Keenan PS. Sticky dollars: inertia in the evolution of federal allocations for HIV care through the Ryan White HIV/AIDS Program. Publius. 2011;4(1):101-125. Centers for Disease Control and Prevention. Gateway to health communication & social marketing practice. http:// www.cdc.gov/healthcommunication. Accessed July 30, 2013. National Alliance of State & Territorial AIDS Directors. Investing in health department HCV testing—2013 survey results. http://nastad.org/docs/HCV-Testing-BriefFINAL-June-2014.pdf. Accessed December 1, 2014. Stancliff S, Agis B, Rich JD, Burris S. Syringe access for the prevention of blood borne infections among injection drug users. BMC Public Health. 2013;3:37. Moyer VA. Screening for hepatitis C virus infection in adults: U.S. Preventive Services Task Force recommendation statement. Ann Intern Med. 2013;159(5):349-357. Martin EG, Schackman BR. Updating the HIV-testing guidelines—a modest change with major consequences. N Engl J Med. 2013;368(10):884-886. Centers for Disease Control and Prevention, US Department of Health and Human Services. Program Collaboration and Service Integration: Enhancing the Prevention and Control of HIV/AIDS, Viral Hepatitis, Sexually Transmitted Diseases, and Tuberculosis in the United States. Atlanta, GA: Centers for Disease Control and Prevention. http://www.cdc.gov/ nchhstp/programintegration/docs/207181-C_NCHHSTP_ PCSI%20WhitePaper-508c.pdf. Published 2009. Accessed July 30, 2013.
Copyright © 2015 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
Context: Chronic viral hepatitis is a leading infectious cause of death. The Centers for Disease Control and Prevention (CDC) released updated recommendations for hepatitis C virus testing, including recommending that all individuals born between 1945 and 1965 be tested once. States’ consistency with these national testing guidelines is unknown. Objective: To evaluate the extent to which state health departments have current hepatitis C virus testing recommendations listed on their Web sites, consistent with national guidelines. Design: The CDC guidelines were reviewed to identify the risk groups recommended for or against testing. State health department Web sites (50 US states, the District of Columbia, and Puerto Rico) were then systematically reviewed to classify whether, for each risk group, testing is recommended, not recommended, or with unclear recommendations. Main Outcome Measure: States’ consistency with national recommendations for each risk group mentioned by the CDC. Results: Among the risk groups that the CDC currently recommends for testing, 50% of states updated their Web sites to include individuals born between 1945 and 1965. All states recommend testing current or former injection drug users, but only 58% recommended testing HIV-positive individuals. Among the risk groups for which the CDC has issued uncertain recommendations, states most frequently recommended testing individuals with tattoos or body piercing done with unsterile materials (46%) or with a history of multiple sex partners (31%). Conclusions: There is substantial variation in state Web sites’ consistency with the CDC guidelines. The public health importance of risk factors is not associated with their inclusion in Web content. Improving the uptake of these recommendations and the manner in which they J Public Health Management Practice, 2015, 00(00), 1–6 C 2015 Wolters Kluwer Health, Inc. All rights reserved. Copyright
are conveyed to the public are critical to increasing diagnoses and averting new infections. KEY WORDS: guidelines, health policy, hepatitis C, screening
The Centers for Disease Control and Prevention’s (CDC’s) updated guidelines for hepatitis C virus (HCV) testing recommend that all adults born between 1945 and 1965 be tested once, regardless of other risk factors.1,2 This cohort is at increased risk due to exposures before the implementation of HCV control measures such as testing the US blood supply, and three-fourths of all cases of HCV infection and HCVassociated mortality are in this group.1,3 Chronic viral hepatitis affects 3.2 million Americans4 and is a major cause of liver cirrhosis and liver cancer.5,6 HCV is a leading infectious cause of death in the United States,7 and the age-adjusted mortality rate for HCV (4.58 deaths Author Affiliations: The Nelson A. Rockefeller Institute of Government, State University of New York, Albany (Dr Martin); Rockefeller College of Public Affairs and Policy, University at Albany–State University of New York, Albany (Dr Martin and Mss Norcott and Khalid); and AIDS Institute, New York State Department of Health, Albany (Mr O’Connell). The authors are grateful to Bruce Schackman, for helpful comments on the research design and an earlier draft of the manuscript, Matthew St. Pierre, for conducting a second review of state guidelines, and Michele Charbonneau, for assistance with the map. The views expressed in this article are those of the authors and not those of the New York State Department of Health. The authors did not receive funding for this work, and have no conflicts of interest to declare. Correspondence: Erika G. Martin, PhD, MPH, Rockefeller College of Public Affairs and Policy, University at Albany, 1400 Washington Ave, Milne 300E, Albany, NY 12222 ([email protected]). DOI: 10.1097/PHH.0000000000000266
1 Copyright © 2015 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
2 ❘ Journal of Public Health Management and Practice per 100 000 people) is higher than that for HIV (4.16 deaths per 100 000 individuals).8 Advances in drug therapies make it possible to cure most individuals living with HCV infection with fewer side effects, although identifying and subsequently treating patients are challenging.9 Of the estimated 3.2 million individuals living with chronic HCV infection in the United States, only 5% to 6% have been successfully treated.10 The CDC’s recommendations are not a mandate but are important for shaping policy and practice. They may affect funding priorities and population health indicators that health departments report on funding applications. They may motivate states to develop relevant laws and regulations, such as New York’s recent laws mandating the offer of HIV and HCV tests. Aligned recommendations by the CDC and other national bodies such as the US Preventive Services Task Force can encourage medical societies and other professional associations to issue new practice recommendations and reinforce the importance of HCV testing.11 Policy implementation may be thwarted at multiple levels. Under the US federalist system, only states have the constitutional authority to codify these recommendations into law or regulatory procedure. Although federal agencies can employ financial incentives such as funding public health activities or making funding conditional on outcomes, states cannot be forced to adopt screening guidelines or mandate implementation among practitioners. This can cause considerable variation in state practices. Two years after the CDC released its updated recommendations on HIV testing in 2006, one-third of states had statutes that were inconsistent with national recommendations.12 Beyond state policies, expanded screening requires that medical providers offer and patients accept testing. In the case of HIV infection, barriers to physician offers include policies (burdensome consent processes, pretest counseling requirements, and inadequate reimbursement), logistics (insufficient time, competing priorities, and language), and educational (lack of patient acceptance and lack of training); many of these factors are relevant to HCV testing. Barriers to patients accepting HIV testing include fears of adverse consequences, limited expected benefits, incorrect perceptions of being at risk, cultural norms about testing, privacy and confidentiality concerns, cost, inconvenience, and isolation.13 Many of these concerns have been discussed by injection drug users considering HCV testing.14 In the 2 years following the updated HCV testing recommendations, we documented the recommendations that state health departments present publicly on their Web sites. Although these are not the official state guidelines, they are the public manifestation of recommendations to practitioners and the public. We evaluated the extent to which they updated their Web
content to be consistent with the CDC guidelines, variation across states, and the level of detail on their Web sites.
● Methods The CDC recommendations on HCV testing1,15,16 were used to identify important risk groups. They were categorized by whether testing is recommended, testing is not recommended, or testing recommendations are unclear. Web sites from the departments of health of 50 US states, the District of Columbia, and Puerto Rico were reviewed from March to May 2014 to document their testing recommendations for each group. It was also noted whether state Web sites mention HCV guidelines or a state plan for HCV, provide separate HCV Web sites or links for health care professionals, and include recommendations and information about HCV counseling. Data are summarized as the percentage of state Web sites recommending testing for each group and with other information such as strategic plans. In addition, we grouped states that recommended routine testing for adults born between 1945 and 1965 and HIV-positive individuals. These risk groups are particularly important from a public health perspective because they currently represent a high burden of cases.
● Results Recommendations on specific risk groups The Table displays the fraction of state Web sites recommending testing for each risk group. Among the risk groups that the CDC current recommends for testing, only 50% of states updated their guidelines to include adults born between 1945 and 1965. All states (100%) recommend testing among current and/or former injection drug users; only 58% recommended testing among HIV-positive individuals. Almost all states (96%) recommend testing after workplace exposures. However, there were differences in state recommendations for patients with health care exposures or having persistent abnormal alanine aminotransferase levels. A quarter of states (28%) recommend testing nonsexual household contact, although the CDC does not recommend testing this group. Among the risk groups for which the CDC has issued uncertain recommendations, states most frequently recommended testing among persons with tattoos or body piercing done with unsterile materials (46%), persons with a history of multiple sex partners (31%) or sexually transmitted
Copyright © 2015 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
Hepatitis C Virus Screening Recommendations
❘ 3
TABLE ● Percentage of Web Sites from US States, District of Columbia, and Puerto Rico Recommending HCV Testing for Specific Risk Groups Mentioned in the CDC Guidelinesa qqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqq
Risk Group
CDC Testing Recommendation
States Recommending Testing on Web Sites, %
States With Uncertain Recommendations on Web Sites, %
Yesb Yes Yes Yes No No No
50 58 85 63 0 28 0
2 0 0 0 0 0 0
Yes Unclear Unclear
100 8 2
0 4 4
Unclear
46
2
Unclear Unclear Unclear
31 13 27
2 4 6
Yes Yes Yes Yes
88 87 52 96
0 0 0 0
Yes
96
0
No Unclear
2 6
0 2
Population-based risks Born between 1945 and 1965 Infection with HIV Children born to HCV-positive women Persistently abnormal alanine aminotransferase levels Pregnant women Household (nonsexual) contacts of HCV-positive persons General population Behavioral risks Current and/or former injection drug users Intranasal and noninjecting illegal drug users Persons with a history of tattooing or body piercing done with sterile materials or unspecified Persons with a history of tattooing or body piercing done with unsterile materials Persons with a history of multiple sex partners Persons with a history of sexually transmitted diseases Long-term steady sexual partners of HCV-positive persons Health care exposures Received clotting factor concentrates produced before 1987 Ever on long-term hemodialysis Received blood from a donor who later tested positive for HCV Received a transfusion of blood, blood components, or an organ transplant before July 1992 Health care, emergency medical, and public safety workers after needlesticks, sharp object injuries, or mucosal exposures to HCV-positive blood Health care, emergency medical, and public safety workers Recipients of transplanted tissue (eg, corneal, musculoskeletal, skin, ova, sperm) Abbreviations: CDC, Centers for Disease Control and Prevention; HCV, hepatitis C virus. a The authors’ review of state department of health Web sites from March to May 2014. b Age cohort risk group added to the most recent CDC testing guidelines in 2012.
diseases (13%), and long-term steady sexual partners of HCV-positive persons (27%). The Figure illustrates state Web sites’ recommendations for adults born between 1945 and 1965 and HIV-positive individuals. One-third of states (31%) did not recommend routinely screening either group, whereas just over two-fifths (40%) recommended routinely screening both groups.
separate Web sites or links for health care workers, although most states did not have additional information on HCV counseling training or links to relevant Web sites about how to conduct HCV counseling (38%). State Web sites commonly recommended posttest counseling (62%), half (50%) recommended both pre- and posttest counseling, and 35% do not recommend either.
Other Web site features related to HCV guidelines
● Discussion
Two-thirds of state Web sites (67%) had a strategic, harm reduction, or prevention plan, and 90% included a Web link to the CDC Web site. Two-thirds (63%) had
HCV treatment is dynamic, with rapidly evolving treatments.9,17 Increasing the proportion of
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4 ❘ Journal of Public Health Management and Practice FIGURE ● States’ Consistency With Current CDC Guidelines on HCV Testing Risk Groupsa
qqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqq WA
NH MT
VT
ND
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OR
MA
ID
WI
SD
WY
UT
CA
RI
MI PA
IA
NE
NV
NY
IL
CO KS
NJ
IN WV
MO
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SC
AR MS
TX
DE DC
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TN AZ
CT
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Population p Risk Neither HIV+ only Baby boomer only HIV+ and baby boomer
HI
PR Abbreviations: CDC, Centers for Disease Control and Prevention; HCV, hepatitis C virus. a This figure displays the states that explicitly describe a recommendation to offer an HCV screening test to all adults born between 1945 and 1965 and HIV-positive individuals on their state department of health Web sites. Baby boomers were recently added to the CDC’s updated HCV testing guidelines. These 2 population risk groups are important because they are associated with a high number of cases.
HCV-infected individuals who are aware of their infection and averting new infections are major goals of the national Viral Hepatitis Action Plan.7 Recognizing the critical role that states play in hepatitis surveillance, treatment, and prevention,3 we focused on how health departments from the 50 US states, the District of Columbia, and Puerto Rico have publicly presented HCV screening information on their Web sites two years after the CDC’s updated guidelines on testing among adults born between 1945 and 1965. There were several areas where state Web sites were inconsistent with the CDC recommendations. Notably, only 50% of states’ guidelines include adults born between 1945 and 1965. The public health importance of risk factors is not perfectly correlated with their inclusion in state guidelines. For example, all states recommend testing current and/or former injection drug users but only 58% recommend testing individuals living with HIV, although one-third of people living with HIV are coinfected with viral hepatitis and coinfection accelerates disease progression.7 In addition to inconsistencies between recommendations on state Web sites and CDC guidelines, there were internal inconsistencies within states’ Web content. Although most
states (90%) linked to the CDC Web site, only one-third had guidelines that were fully consistent with national recommendations. We have several potential explanations for different levels of consistency across risk groups listed on states’ Web sites. The low inclusion of adults born between 1945 and 1965 could be due to time lags for federal guidelines to be interpreted and subsequently adopted by states. The perfect consistency between state and federal guidelines for workplace exposures could reflect additional mandates on occupational risks from the Occupational Safety and Health Administration18 and lobbying by professional associations representing health care workers. Health care exposure risks have a “multiplier effect,” in which improper sterilization of sharps in one facility or a known infection among a donor could trigger state health departments to require that all potentially infected individuals be notified. This could also contribute to states’ perfect consistency for workplace exposures, although it is surprising that there is lower consistency for recommendations to screen individuals who received blood from donors who later tested positive for HCV (52%). There has been rigorous screening for HCV in the US blood
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Hepatitis C Virus Screening Recommendations
supply since 1992, so this risk factor may be unimportant in practice. Staff turnover and limited public health funding for HCV, disease awareness and activism, and political attention may have lowered state health departments’ ability to update their HCV screening guidelines and the information displayed on their Web pages. In the case of HIV, strong advocacy groups lobbied for the creation of and continued funding for the Ryan White HIV/AIDS Program, a stand-alone program dedicated to HIV care.19,20 Other federal agencies including the Substance Abuse and Mental Health Services Administration and the National Institutes of Health earmark funding for HIV. Social marketing campaigns for HIV21 and Ryan White HIV/AIDS Program infrastructure raised disease awareness and generated sophisticated professional associations such as the National Alliance of State & Territorial AIDS Directors.20 In contrast, as a “silent epidemic,” HCV activism is typically supported by HIV advocates with competing priorities and there is limited funding for state and territorial hepatitis programs.3 Not all states receive CDC funding to provide core public health prevention services such as HCV testing. Health departments have few HCV resources, with 89% reporting limited funding for HCV testing and 84% reporting no funding for referral and linkage to medical care.22 Consequently, while some states fund local service providers to conduct HCV testing, others provide indirect support such as technical assistance, laboratory services, and testing kits to local service providers. Finally, because many behavioral risks for HCV infection are stigmatized, states with fewer injection drug users or else with lower legal support for harm reduction strategies such as syringe exchanges23 may not prioritize updating their HCV guidelines. Several changes to the policy environment may increase states’ consistency with federal HCV screening guidelines and subsequent screening rates. First, states may learn from their experiences with HIV testing guidelines. For example, when New York drafted a law requiring the offer of HCV tests in routine medical care settings, policy makers used the recent HIV testing law as a guide. Second, the US Preventive Services Task Force issued new recommendations on HCV screening, assigning a grade B recommendation for screening among high-risk individuals, including onetime screening in the 1945 to 1965 birth cohort.24 This is a critical development because public and private health insurance plans often follow grade A and B recommendations.25 The importance of standard federal recommendations for testing and referral to care was noted in the Viral Hepatitis Action Plan, as inconsistent recommendations can be confusing for clinicians and a barrier to testing initiatives.7 Third, there is
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better awareness of the interrelationship among HCV, HIV, and sexually transmitted infections, as demonstrated by the CDC’s Program Collaboration and Service Integration (PCSI) strategic priority to strengthen collaborations and integrate services across diseases.26 Although PCSI does not increase funding, it facilitates health departments’ abilities to use funds for broader purposes serving this disease cluster. In addition to PCSI, the CDC recently launched a new “Know More Hepatitis” social marketing campaign and funding for viral hepatitis testing.3 Finally, some advocacy groups have a new focus on HCV issues, such as New York’s Voices of Community Activists and Leaders (VOCALNY), formerly the NYC AIDS Housing Network. This study has several limitations that suggest future research. It is cross-sectional and does not capture dynamic changes. State departments of health may contract nongovernmental organizations to conduct HCV testing and set priorities in these contracts, or else an HCV testing guidance may not be posted electronically. Monitoring department of health Web sites is an imperfect measure of states’ recommendations. However, these recommendations are likely to be implemented in practice because they are readily available to the public. Future work could enumerate state laws and regulations related to HCV testing and compare how they match those described on state Web sites. Qualitative research could elucidate how departments of health make decisions on testing recommendations. Overall, these findings suggest a couple of recommendations for practice. To reduce implementation time lags, the CDC could provide more technical assistance to state program directors to implement national guidelines and foster the exchange of information through professional networks such as the National Alliance of State & Territorial AIDS Directors. In our experience, state departments of health are more proactive with issues that are immediate emergencies (such as the recent Ebola outbreak) or else have funding. Consequently, translating federal guidance into state practice will require increased funding for viral hepatitis. Although there is funding for surveillance and viral hepatitis coordinators, this falls short of HIV testing, which has a prevention funding stream through the CDC and a care stream through the Health Resources and Services Administration. We predict that additional funding dedicated to viral hepatitis will be critical to reducing the epidemic. REFERENCES 1. Centers for Disease Control and Prevention. Recommendations for the identification of chronic hepatitis C virus infection among persons born during 1945-1965. http://www .cdc.gov/mmwr/preview/mmwrhtml/rr6104a1.htm. Published 2012. Accessed July 30, 2013.
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