OPPORTUNITIES FOR EXPANDING HIV-RELATED HEALTHCARE

1. OPPORTUNITIES FOR EXPANDING HIV-RELATED HEALTHCARE Douglas Wilson Infectious Diseases Research Unit University of Cape Town

2. We are confronting the greatest single healthcare challenge in modern history

3. National government has a central and essential role to play in co-ordinating HIV care. • The public, private and NGO sectors need to work together. • Information on HIV care centres needs to be readily available. • The epidemic can be used as an opportunity to create a sustainable and multifunctional health-care system.

4. Specific needs • Simple, comprehensive healthcare messages. • A national website for HIV resources. • Available and integrated HIV services. • Effective tuberculosis control. • HIV medications obtainable through the private sector at State tender prices. • Opportunities for accessing antiretroviral drugs through well managed programmes.

5. LINDIWE’S STORY • Studied in Gcuwa in the E. Cape - passed Standard 10 in 1998. • Brief relationship with an older man from Gauteng. • Moved to Cape Town in 2000, to look for work, staying with her Grandmother in Khayelitsha. • Met her boyfriend in early 2001, working at the oil refinery. • Developed a painful skin rash late 2001.

6. Lindiwe’s story continued…. • Taken by boyfriend to a private doctor. • Diagnosed with shingles. • Cost of generic aciclovir ~R400.00 • Queued at local community health clinic • Confirmed diagnosis but aciclovir not on code - referred to Jooste Hospital

7. Lindiwe’s story continued…... • Seen late that night by casualty doctor who took blood tests ……. • The next morning told to take the discharge letter to the hospital pharmacy for aciclovir (cost to the state R52.90). • Read through letter before handing it in …..

8. Diagnosis: HIV positive

9. loveLife I DON’T JUST WANT SEX: SHOW ME THE MONEY! SHAME - SHE DIDN’T REALISE HER SUGAR- DADDY ALSO GAVE HER HIV

10. Lindiwe’s story continued ….. • Lindiwe did not disclose her diagnosis to anyone. • She separated from her boyfriend. • She became withdrawn and depressed. • She stopped looking for work. • “I was just waiting to die.”

11. OPPORTUNITY • Lindiwe could have been referred for voluntary counselling and testing (VCT). • Lindiwe could have paid for her treatment from the private pharmacy if the state price were made available to the private sector on a marginal profit basis.

12. Voluntary counselling and testing • Allows South Africans to choose if, where and when they will be tested for HIV infection. • Allows for adequate pre-test counselling, and time for consideration and family discussion before the test. • Allows for psychological preparation. • A constructive response to a positive result is much more likely.

13. Voluntary testing and counselling continued……. • VCT is time and labour intensive. • Adequate infrastructure is essential …… • Counsellor debriefing is vital in order to prevent burnout.

14. Why didn’t the doctors provide Lindiwe with VCT? • Too busy. • Too difficult. • “I'm feeling so helpless and guilty” • “Where are the VCT facilities?” • “There is nothing out there!”

15. OPPORTUNITY • A national HIV service resource directory needs to available on the Web - and to be regularly updated! • Healthcare workers need to be empowered to care for their patients properly. • Healthcare workers need to be taught about the importance of VCT.

16. Why was the treatment so expensive at the private pharmacy? • South Africa has two parallel systems for drug distribution…… • The State obtains drugs at massively discounted prices due to bulk purchase. • The private sector cannot (legally!) access these drugs.

17. OPPORTUNITY • The private sector has the potential to play a huge role in delivering HIV care if the medications were available at the State tender price. • Profiteering could be prevented by widely publishing the tender price • (Possibly a role for TAC in policing private prices.)

18. OPPORTUNITY • HIV infection needs to be destigmatised. • Positive role models need to be promoted nationally. • HIV positive people need to be taught how to look after themselves.

19. OPPORTUNITY • A support group would have helped Lindiwe to come to terms with her diagnosis, provided accurate information on HIV, and helped her to resume living her life. • Support groups need funding, infrastructure and supervision which can be provided by National Government and NGOs

20. Lindiwe’s story continued ….. • Lindiwe began to loose a great deal of weight, to cough and sweat at night. • Itchy bumps came out all over her skin. • People began to whisper that she was HIV positive. • Her depression and social withdrawal deepened ……

21. Lindiwe’s story continued ….. • Her Granny became increasingly worried and took her to the TB clinic. • She was given containers to cough into. • Three days later she was told she did not have TB • She became increasingly weak, had diarrhoea all the time, and spent most of the day in bed.

23. Lindiwe’s story continued ….. • Her Granny became desperate and arranged for a car to take her to Jooste Hospital. • Lindiwe was afraid, but too weak to refuse. • She was admitted, had a chest X-ray and an ultrasound scan …… • Disseminated tuberculosis was diagnosed. • AIDS-defining, CD4 count 82 cells/μl

24. TUBERCULOSIS “….. where youth grows pale, and spectre thin, and dies …..” (Keats)

25. OPPORTUNITY • Are the standard national protocols for the diagnosis of HIV-related TB accurate? • TB is the one of the commonest causes of death in HIV infected people in Africa. • TB can be prevented and cured.

26. OPPORTUNITY • People need to be taught about TB symptoms, and to know that if they are HIV positive special tests may need to be done to diagnose the TB. • National TB programmes need to be refined by so that HIV-associated TB is diagnosed rapidly and accurately. • Research is needed …….

27. OPPORTUNITY • TB can be prevented: the best way is by rapidly diagnosing and curing all people with contagious disease (DOTS programme). • Prophylaxis with isoniazid reduces the risk of tuberculosis by 60-70% for with positive tuberculin skin tests. • Highly active antiretroviral therapy prevents TB……..

28. Effect of HAART on TB risk at Somerset Hospital NON-HAART HAART TB incidence per 100 person years Overall WHO 1/2 CD4 >350 CD4 200 - 350 CD4 <200 WHO 3/4 Badri, Wilson, Wood Lancet 2002 359 2059-64

29. Lindiwe’s story continued ….. • Lindiwe received DOTS from the community “Nompilo”. • After 2 months of TB treatment she had gained 8 kg, and she felt much stronger. • “What about my future ?….. What is this about antiretrovirals? …..”

30. Lindiwe’s options EITHER • 1-2 years of reasonable quality life followed by terminal illness, and home-based care. • Antiretroviral therapy OR

31. OPPORTUNITY • Home based care would offer Lindiwe some assistance with managing her increasing disability and symptoms. • Service is delivered by paid community care givers. • She would still need numerous clinic visits and several hospital admissions.

32. THABILE’S STORY • 32 year old postman, married, 2 children, wife working for Telkom. • Decided to test for HIV in 2000 after loosing >10kg of weight, with ongoing diarrhoea ….. • Diagnosed with tuberculosis and Cryptosporidium at Somerset Hospital. • CD4 count 54 cells/μl.

33. Thabile’s story continued ….. • Disclosed status to his wife - supportive response. • Disclosed to his employer - too unwell to ride his bicycle so put onto shift work ….. • Could not cope so accepted boarding.

34. Thabile’s story continued ….. • Together with his wife decided that he must start antiretrovirals. • Sold the car to pay for the first few month’s treatment. • Endured three months of nausea and diarrhoea due to side effects from the combination of TB treatment and HAART.

35. Thabile’s story continued….. • Employer motivated for the medical aid to meet some of the cost of HAART. • His wife encouraged him to continue to take his treatment regularly every day. • Thabile’s condition began to slowly improve …...

36. Thabile’s story continued….. • 18 months later he has regained all his weight, feels completely well and wants to go back to work. • Thabile will still need regular “check-up” visits to the HIV clinic.

37. Thabile’s options ….. • Remaining on HAART for the foreseeable future, and remaining well. • Possibly developing long-term drug side-effects. • Possibly developing HIV resistance. OR OR

38. OPPORTUNITY • National Government has the power and South Africa has the capacity to support large antiretroviral pilot programmes using locally manufactured generic drugs. • Side effect and resistance screening should be an integral part of these programmes. • Experience gained from DOTS programmes and the MSF initiative could be tapped …..

39. VOLUNTARY COUNSELLING AND TESTING CO-ORDINATION BY NATIONAL GOVERNMENT POSITIVE MEDIA DESTIGMATIZATION SUPPORT GROUPS HOME BASED CARE TB DIAGNOSIS / DOTS HAART / ADHERENCE SUPPORT / PMTCT COLLABORATION BETWEEN PUBLIC AND PRIVATE HEALTH CARE SYSTEMS

40. Other health conditions benefiting from similar infrastructure • Hypertension • Diabetes • Asthma • Epilepsy • Alcoholism • Smoking • Domestic violence

41. WITH LEADERSHIP AND CAPACITY BUILDING THE WAR AGAINST HIV CAN BE WON. THE FUTURE IS POSITIVE.

43. Prof Gary Maartens Dr Karen Cohen Prof Robin Wood Dr Linda Gail Bekker Dr Ashraf Grimwood HIV Clinicians Society Sr Mary Sihlangu Mrs Cordelia Faleni Acknowledgements