TREATMENT LITERACY TRAINING

1. TREATMENT LITERACY TRAINING

2. My Personal Path to Treatment Treatment Literacy

3. My Personal Path In this activity: You will illustrate on a flip chart, your personal HIV history from when you were diagnosed to now, and reflect on critical steps in your journey. • As an example of how to illustrate your path, let’s do a journey chart for, say, weight loss together….

4. WEIGHT LOSS • DOCTOR • (visited the doctor to talk about weight loss options) • DIET • (went on a diet and cut out late night snacks/desserts) • WOKE UP • (realised I was overweight) • WEIGHT LOSS ACHIEVED • GYM • (joined the gym but did not go regularly- • still no weight loss) • GYM PARTNER • (found a gym partner and started going regularly) • DIET • (went on a more serious diet and cut out peanuts and wheat products)

5. Now It’s Your Turn! • Individually, on flip chart paper: • Draw a diagram that outlines your personal HIV history from when you were diagnosed until now • Hang your diagram on the wall in such a way so that you can add to it. • As the workshop progresses use Post-it notes to add: • Opportunities for peer support (Yellow) • Issues or problems that need to be addressed (Pink) • Things that went well and might be “good practice” (Green) • Other issues or things that you would like to note (Blue)

6. What is Treatment Literacy? • Treatment literacy is an information and communication process : • where persons know their HIV status • how to access treatment • how HIV works • how the medication works • the importance of taking it

7. What is Treatment Literacy? • offer support and ideas for adhering to treatment and helping others to do so. • It is not only important for healthcare workers and people living with HIV, but for everyone including other public and private organizations, family, friends and the wider society.

8. Importance of Treatment Literacy • Increase in HIV Voluntary Testing and Counselling • Help PLHIV and others understand why Antiretroviral Therapy (ART) is needed, what it can and cannot do • Starting treatment and staying in care can lead to improved health outcomes • People living with HIV (PLHIV) know the name of the medication their taking, its side effects, nutrition and positive living • Promotes better adhrence to antiretroviral (ARV) • Promotes safe sex and consistent condom use

9. Importance of Treatment Literacy (Cont’d) • Prevent opportunitistic infections and sexual transmitted infections • Leads to viral suppression • Reduce HIV transmission • Reduce HIV-related deaths

10. Disease progression Treatment Literacy

11. What is HIV? • HIV is a sexually transmitted infection (STI). It can also be spread by contact with infected blood or from mother to child during pregnancy, childbirth or breast-feeding

12. HIV in the Body: Adult Natural History • Most people will have mild flu-like symptoms two to six weeks after being infected • Some have no symptoms or don’t recall any • The risk of transmitting the virus at this stage is very high • Person gets infected with HIV and it multiplies very rapidly – “acute Infection” The virus quietly and slowly multiplies – “clinical latency” • No signs/symptoms • Latent period for two to more than 10 years • The immune system is still strong The virus damages certain organs and the general immune system following rapid replication of the virus – ”advanced HIV” or “Acquired Immune Deficiency Syndrome (AIDS)” • Some signs/symptoms, due to weakening immune system • Opportunistic Infections (OIs) and/or cancers are able to survive and dominate the very weak immune system

13. HIV and the Immune System • The immune system in the body tries to protect it from foreign agents like germs and cancer cells. • There are many type of cells and substances involved in the immune system. • T-lymphocytes (T cells) are one type of white blood cell in the immune system. • HIV attacks the T cells that have a special receptor (molecule) called CD4, so these lymphocytes often are called CD4 cells. (HIV has the key to unlock and enter the CD4 door of the T cell)

14. Acute HIV (Primary Stage) Most people infected by HIV develop a flu-like illness within a two weeks to two months after the virus enters the body. This illness, known as primary or acute HIV infection, may last for a few weeks. Possible signs and symptoms include: • Fever • Headache • Muscle aches and joint pain • Rash • Sore throat and painful mouth sores • Swollen lymph glands, mainly on the neck

15. Chronic HIV (Latent Stage) • In some people, persistent swelling of lymph nodes occurs during this stage. Otherwise, there are no specific signs and symptoms. HIV remains in the body and in infected white blood cells. • This stage of HIV infection generally lasts around 10 years if you're not receiving antiretroviral therapy. But sometimes, even with this treatment, it lasts for decades. Some people develop more severe disease much sooner

16. Progression to AIDS (Advanced HIV Stage) • Acquired Immunodeficiency Syndrome (AIDS) is a chronic, potentially life-threatening condition caused by the Human Immunodeficiency Virus (HIV). By damaging your immune system, HIV interferes with your body's ability to fight the organisms that cause disease.

17. Progression to AIDS (Advanced HIV Stage) • When AIDS occurs, your immune system has been severely damaged. You'll be more likely to develop opportunistic infections or opportunistic cancers — diseases that wouldn't usually trouble a person with a healthy immune system.

18. HIV and its Effect on CD4 Cells • A person gets infected with HIV and it multiplies very rapidly – “acute infection” • CD4 is usually high, well above 500 cells/ml • Viral load (VL) is just starting to climb The virus quietly and slowly multiplies –”clinical latency” CD4 is usually above 200–499 per ml and VL is at a steady level The virus damages certain organs and the general immune system, following rapid replication of the virus –”Advanced HIV” or “AIDS” CD4 is below 200 cells/ml VL above 100,000 cop/ml

19. HIV and AIDS • As HIV damages the CD4 cells, the immune system becomes weaker. • A person can start getting infections when the immune system cannot effectively fight them off; untreated opportunistic infections (OIs) can eventually lead to death due to immunodeficiency. • When the immune system gets to an extremely deteriorated state—at a certain point in the most advances stages—this deficiency in the immune system is called advanced HIV, or Acquired Immune Deficiency Syndrome (AIDS). • The World Health Organization defines AIDS as the occurrence of any of more than 20 OIs or HIV-related cancers. Source: World Health Organization. 2016. “HIV/AIDS.” Available at: http://www.who.int/features/qa/71/en/.

20. Pruritic Papular Eruption (PPE) Itchy, diffuse rash Occurs mostly on the arms and legs, but trunk and face involved in 50% of cases Does not appear on the palms of hands or soles of feet An Example of an Advanced HIV Condition

21. Common AIDS-defining Conditions

22. Common AIDS-defining Conditions 2

23. Less Common AIDS-defining Conditions

24. Less Common AIDS-defining Conditions 2

25. Examples of Conditions* for Diagnosis of AIDS Esophageal Candidiasis (extensive thrush) • White plaques on roof of mouth extending into esophagus (gullet) Shingles Extensive, blistering rash, often with severe burning pain, tingling, or extensive sensitivity *These conditions do not occur only in people living with HIV

26. Factors that Improve Survival • Consistently taking antiretroviral therapy with goal of undetectable viral load. • Staying in HIV care. • Closely adhering to your health provider’s recommendations. • Eating nutritious foods. • Taking care of themselves: Exercise, rest, no cigarette smoking, no illicit drugs, safer sex, and emotional health. • Patient’s genetic make-up. • When all done together life expectancy for people living with HIV has been shown to be almost the same as HIV-negative individuals.

27. Moving to Test and Treat and Stay • As of December 2016, the Government of Jamaica adopted the “Test and Treat” strategy. • This means that people living with HIV that are diagnosed, are prepared and are offered antiretroviral treatment (ART). • Studies done across the world have now clearly demonstrated that ART is the best treatment for HIV. • ART reduces HIV-related OIs and cancers, deaths, and conditions not traditionally considered to be associated with HIV, such as non-HIV related cancers, cardiovascular disease, kidney failure, and liver failure.

28. Adopting Differentiated Care for HIV Client-centered approach that simplifies and adapts sets of services to address the specific requirements of various groups of people living with HIV while reducing unnecessary burdens on the health system. Adapted from: World Health Organization. 2016. “Differentiated Care for HIV: A Decision Framework for Antiretroviral Therapy.” Available at: http://www.differentiatedcare.org/.

29. Differentiated Care for HIV: Delivery of Specific Care Packages Based on Care Needs Customised Care Packages: • People presenting well with higher CD4 counts/virally suppressed • People with advanced disease • People who are unstable on treatment and need careful monitoring • People who are stable on ART • Other variables: chronological and developmental age, missed appointments, loss to follow-up, adherence, logistics, stigma and discrimination Differentiated Care: Characterised by 4 delivery components: • Location of service delivery • Provider of the services • Type of services delivered • Frequency of the service WHO HIV Treatment and Care: What’s New in Service Delivery Nov. 2015

30. At Initial HIV Diagnosis 1 • The client should be linked to HIV care in order to receive a customized package of care to meet their HIV service needs. • Assessments to determine individuals readiness to start ART should be started immediately upon entry to HIV care. • ART should be initiated as soon as a person is ready to commit to treatment regardless of the availability of baseline laboratory tests. • A thorough clinical evaluation must be performed on all newly-diagnosed HIV infected patients. • Client should be screened for risk to lost to follow-up.

31. At Initial HIV Diagnosis 2 Upon diagnosis the client should be promptly linked to HIV care and treatment where the following set of services is offered: • Co-morbidity screening treatment and prevention: • Co-trimoxazole (PCP-pneumocystis Carinii pneumonia) • INH prophylaxis (to prevent TB) • Laboratory baseline values • Adherence support • Psychological and social support • Clinical management of patients presenting with advanced HIV Source: Adapted from WHO Guidelines, 2015, Available at: http://www.who.int/hiv/pub/guidelines/en/.

32. At Initial HIV Diagnosis 3 Education and Counselling • ART-readiness assessment • Positive Health, Dignity, and Prevention first tier package: • HIV Basics • Treatment literacy • Disclosure support • Prevention counselling • Stigma reduction • Community support and linkages

33. At Initial HIV Diagnosis 4 • Thorough clinical evaluation must be performed • Comprehensive history and physical examination allow for: • Accurate assessment of WHO clinical stage • Screening for active TB disease • Diagnosis and management of other opportunistic infections and co-morbidities

34. ART Monitoring • Clinical assessment • Laboratory testing • Continuous adherence monitoring • Adherence and retention support • Disclosure support • Peer support

35. Viral Load • Viral Load: A viral load count is a lab test that measures the number of HIV particles in a milliliter of blood. These viral particles are called "copies." A viral load test helps provide information about the progression of the virus in the patient’s blood and how well antiretroviral therapy is controlling the virus. • The goal of ART is to move the viral load down (i.e., to undetectable levels). • Undetectable Viral Load/Viral Suppression: In general, your viral load is declared "undetectable" if it is under 20 to 75 copies in a sample of your blood (sometimes generalisedas under 50 copies/ml). The exact number depends on the lab that analyses your test. When undetectable the chance of passing the virus onto another person is almost zero.

36. Viral Loads Source: Department of Health & Human Services, USA. 2016. “Undetectable Viral Load.” Available at: https://aidsinfo.nih.gov/education-materials/glossary/876/undetectable-viral-load.

37. Viral Load Monitoring • Laboratory monitoring is not a prerequisite for the initiation or continuation of ART. • Viral load monitoring is the preferred lab test for monitoring the success of ART. • Viral load should be measured every 6 to 12 months after ART initiation and annually thereafter. • CD4 monitoring continues to play an important role in monitoring HIV patients to asses their need for co-trimoxizole prophylaxis and the risk of OIs. • CD4 monitoring is now de-emphasisedin favor of viral load monitoring for monitoring the success of ART because of viral load’s greater accuracy in identifying treatment failure.

38. Initial and Regular Checks That Should be Done • Weight • Complete blood count (CBC) • HIV viral load • CD4 cell count • STI screening • TB screening • Urine test • Blood chemistry (liver function tests, kidney function tests, blood glucose, lipids) • Hepatitis B • HTLV I/II (Human T lymphotropic virus and retroviruses) • Pap smear

39. Key Points • Some people do not have signs of HIV and may not be aware of their HIV status. • A blood test is the best way to know HIV status. • A thorough physical assessment of all body systems may uncover signs of OIs, indicating that the person has AIDS. • A blood test (CD4, viral load, and others) to check the immune status is required, even if there are no signs of HIV. • Some people may need OI prophylaxis to prevent illnesses and further damage to their immune system. • Consistent use of ART maximisessupressed viral load, stops HIV progression and can prevent mother-to-child transmission and sexual transmission of the virus.

40. ART & ARV Treatment Literacy

41. ARV VS ART • ARV (Anti-retroviral) is a drug that is used to prevent HIV from multiplying such as Tenofovir, Lamivudine and Tenofovir • ART (Anti-retroviral Therapy/Treatment) is the use of HIV medicines (ARV) to treat HIV infection, suppress the virus and stop the progression of the HIV virus

42. Goals of Antiretroviral Therapy (ART) • Suppress the virus • Restore the immune system • Treat the complicating illnesses • Minimize the risk of resistance and toxicity • Improve the quality of life and clinical outcome • TREAT THE WHOLE PERSON, not just the diseases they have

43. Goals of Antiretroviral Therapy (ART) (continued) • Decrease chance of transmission to another person when someone has an undetectable viral load – treatment as prevention • Prevent HIV transmission in HIV-negative people who are at high risk of being exposed to HIV (pre-exposure prophylaxis, or PrEP) • Prevent HIV transmission in HIV-negative people who have been exposed to HIV (post-exposure prophylaxis, or PEP)

44. Successful ART Requires Regular Visits • You need regular visits to see providers for your care as needed, beforeand after starting ART. • You should see not only the nurse and doctor, but also most or all of the following: • Multidisciplinary team: Nutritionist, adherence counselor, social worker, pharmacist, laboratory worker, contact investigator and/or mental health provider, dental provider, family planning counselor, obstetrician/ gynecologists, etc.

45. Care Visits also Include Lab Tests … • CD4 test: The test that gives an idea of how well the immune system is (the higher the better). • After first CD4, a repeat is done at three months and then once every six months, or at least once per year. • Viral load (VL) test: The test that measures the number of HIV “copies” in your blood. If you are taking your ART as prescribed, it can tell how well it is working to control the virus (the lower the VL the better). • It is done six months after starting ART, then every six months or at least once per year. • Other screening (e.g., for tuberculosis, cervical cancer for women, and tests to check organs like liver, kidney, heart, lungs).

46. How ART can Improve the Course of HIV in the Body Antiretroviral Therapy CD4+ Cells Viral Load Time after infection This graph shows the effect of ART on HIV progression. The time to fall in immune status varies for individuals, hence, it is denoted by //.

47. Goals of Antiretroviral Therapy Decrease the amount of HIV in the blood (typically until viral load is less than 50 copies) Preserve immune system (so CD4 count increases) Long and healthy life (check other systems: liver, kidney function, etc.)

48. Moving to Test and Treat • As of December 2016 the Government of Jamaica adopted the “Test and Treat” strategy. • This means that antiretroviral treatment is offered to every person living with HIV in Jamaica as soon as they know their status. • Studies done across the world have now clearly demonstrated that ART is the best treatment for HIV. • ART reduces HIV-related opportunistic infections and cancers, deaths as well as conditions not traditionally considered to be associated with HIV, such as non-HIV-related cancers, cardiovascular disease, kidney failure, and liver failure.

49. Ready or Not? • The decision to initiate ART for a given patient depends on your “readiness” to start. • Your provider will assess all aspects related to adherence (e.g., potential challenges and opportunities) and work with you to develop a simple adherence plan before starting ART. What might some of these barriers be? What are facilitators for succeeding? • Consider: HIV knowledge, cultural and religious beliefs, literacy level, depression or other psychiatric illness, substance abuse, denial, disclosure issues, age, degree of illness, previous experience with healthcare system. Refer to other modules on disclosure, stigma, etc.

50. What are Some Concerns about Taking Pills? What if I vomit up the pills? What if I have side effects? How many pills do I have to take? Who and what are some resources and supports to help me succeed? What if I miss a dose? How can I take these without friends & family knowing Tablets every day for the rest of my life..? 50