REACH

1. REACH Health Portfolio Committee 17 May 2005 Nusreen Khan

2. MISSION To assist in the provision of sustainable, transparent healthcare support to the South African consumer by: • Offering the consumer a platform to review their healthcare experiences • Promoting the education of the consumer to create awareness on patients’ healthcare rights

3. VISION QUALITY HEALTHCARE Support lobbing efforts to ensure that the consumer receives treatment structured on sound clinical and evidence based data, so that the management of wellness as opposed to the treatment of illness is allowed. AFFORDABLE HEALTHCARE Assist the consumer to receive quality healthcare that is affordable, by lobbying for a transparent health care environment.. EDUCATION Assist in educating of the consumer thereby ensuring that informed decisions are made.

4. Working Relationships • Relationships with • FPI • SAMA • BHF • Council Medical Schemes • HPCSA • Support Groups • Consumer Union • Diabetes SA

5. Working Relationships • Relationships with • National Osteoporosis Foundation • Chamber Of Financial Advisors • Aon • Psychiatric Focus Forum • HASA • ABSA Health • Cape Medical Plan • Alexander Forbes • Pricing Committee

6. Working Relationships • Relationships with • Health Technology Assessment Steering Committee • PSSA • Health Science Academy • Foundation for Professional Development • PMA • IMSA • SASOP • Anti-Stigma Initiative • SADAG

7. Working Relationships • Relationships with • Spesnet • Private Healthcare Forum • PCMA

8. Psychiatric Commission Health Portfolio Committee 17 May 2005

9. PSYCHIATRIC COMMISSION A commission initiated by Members of the Anti-Stigma Initiative, South African Society of Psychiatrists (SASOP); Rights, Education and Activism for Consumer Health Care (REACH), Hospital Association of South Africa (HASA) Psychiatric Focus Forum

10. Anti-Stigma Initiative OBJECTIVES • To enable patients with psychiatric disorders to receive appropriate treatment in both the public and private sector • To destigmatise the perception that the public has of psychiatric patients and disorders

11. “SHADOW” WHITE PAPERADDRESSING STIGMA AND POSSIBLE DISCRIMINATION OF PATIENTS WITH MENTAL HEALTH PROBLEMS IN THE REPUBLIC OF SOUTH AFRICA

12. Terms of Reference • To explore possible discrimination in the allocation of psychiatric benefits • To assess the impact of limited disease cover in terms of ineffectual treatment of psychiatric disorders • To assess the impact of formulary decisions on the effectual treatment of psychiatric disorders • To question the focus of PMBs on hospitalised treatment only

13. Stigma • For centuries people with psychiatric disorders were kept away from the rest of society, sometimes locked up, often in poor conditions, with little or no say in running their lives. • Today, negative attitudes lock them out of society more subtly but just as effectively. • Stigma is the biggest obstacle to the people who suffer from psychiatric disorders.

14. Psychiatric Commission PROJECT INVESTIGATORS • Dr. Eugene Allers • Prof. Margaret Nair • Dr. Shaquir Salduker • Mrs. Nusreen Khan • Adv. Kurt Worrall-Clare PROJECT RESEARCHERS • The researchers responsible for this project: • Mrs. Nusreen Khan • Adv. Kurt Worrall-Clare.

15. Consultations DoH SA Federation for Mental Health Schizophrenia Foundation SADAG Bipolar Support Group Alzheimers SA Riverfield Lodge Denmar Specialist Psychiatric Hospital Vista Psychiatric Clinic

16. Consultations OCD Association Lesedi Private Clinic SAMA Health Professionals Council SA Council for Medical Schemes Board of Health Funders HASA Mental Health Information Centre DENOSA

17. Endorsements OCD Association Lesedi Private Clinic SAMA HASA Mental Health Information Centre DENOSA

18. Endorsements DoH SA Federation for Mental Health Schizophrenia Foundation SADAG Bipolar Support Group Alzheimers SA Riverfield Lodge Denmar Specialist Psychiatric Hospital Vista Psychiatric Clinic

19. Objectives of Presentation • “Shadow White Paper” • Discrepancies between legislation and practise • To explore possible discrimination in the allocation of psychiatric benefits • Impact of lack of understanding of illness • Treatment decisions (formularies) made by individuals who do not understand illness • To assess the impact of formulary decisions on the effectual treatment of psychiatric disorders • Benefit design by individuals who do not understand illness • To assess the impact of limited disease cover in terms of ineffectual treatment of psychiatric disorders • To question the focus of PMBs on hospitalised treatment only • Find a solution recognizing the economic challenges financing both the insured and non-insured population

20. Objectives of Paper • achieve the provision of humane, sensitive and informed mental health care benefits • Prejudices • ensure that benefits are adequate, readily accessible, fair and equitable • Capping of psychiatric benefits • Specialist, GP and all allied health care professionals pool • Current example

21. Objectives of Paper • ensure that benefits are approved by a peer review panel of practising psychiatrists and other relevant disciplines • Long term repercussions of inadequate treatment overlooked for short term savings • To assess the impact of limited disease cover in terms of ineffectual treatment of psychiatric disorders • provide benefits within a sustainable and affordable financial framework, with due regard to inflation and the cost of health care delivery • Different benefit packages for insured provides different level of access • Cost restraints in public sector

22. Objectives of Paper • work towards reducing mental illness in South Africa, within a framework that is sensitive to patients’ needs and free of all stigma and prejudice • Adequate treatment of first episode • Reduction of debilitating effects of illness (loss of productivity, effect on family and care giver) • Visual impact of a psychiatrically impaired patient (cognitive impairment) • cater for the need to treat certain psychiatric conditions on a long term basis and/or as chronic conditions, thus ensuring that patients are treated fully and effectively, with a reduction in ultimate cost • PMBs

23. The impact of psychiatric illnesses • 14% of diseases worldwide are psychiatric and it accordingly ranks with heart disease and cancer as a major cause of illness. • Ten of the top 20 chronic disabling conditions are psychiatric, including six of the top 10. • 58% of visits to general medical practitioners are due to conditions caused or exacerbated by mental or emotional problems. • 18 to 25% of senior citizens are in need of mental health care for anxiety, depression, psychosis or dementia. • 1% of the population suffer from Schizophrenia. Another 1% suffers from Bipolar Disorder. • One in 10 people will suffer from disabling anxiety and • One in four will develop depression.

24. The impact of psychiatric illnesses • The annual rate of suicide worldwide is estimated to be 800 000. • In South Africa it is estimated that the same number of people commit suicide that are killed in motor vehicle accidents every year. • One in 33 children and one in eight adolescents may suffer from depression. • The World Bank and the World Health Organisation predict that by the year 2020, psychiatric illness will be the leading cause of disability in the world.

25. Legislation • Constitution of the Republic of South Africa, Act No.108 of 1996 • Mental Health Care Act, Act No. 17 of 2002 • Promotionof Equality and Prevention of Unfair Discrimination Act, Act No. 4 of 2000 • Medical Schemes Act, Act No. 131 of 1998 • Patients Rights Charter • Batho Pele Principles

26. Constitution Section 9(1) • “the State may not unfairly discriminate directly or indirectly against anyone on one or more grounds, including race, gender, sex, pregnancy, marital status, ethnic or social origin, colour, sexual orientation, age, disability, • Accordingly, nobody is to be denied the equal protection and benefit of the law. • Funders, practitioners and other health professions should be aware that other legislation provides directly and indirectly for the mentally ill, some of which expressly prohibits direct or indirect discrimination against such individuals.

27. Mental Health Care Act The stated objects of the Mental Health Care Act are: • To regulate mental health care in a manner such as makes the best possible mental health care, treatment and rehabilitation services available to the population equitably, efficiently and in the best interests of mental health care users, within the limits of the available resources • To co-ordinate access to mental health care, treatment and rehabilitation services to the various categories of mental health care users • To integrate the provision of mental health care services into the general health services environment

28. Mental Health Care Act 10(1) provides that: • “(a)mental health care user may not be unfairly discriminated against on the grounds of his or her mental health status”.

29. Mental Health Care Act The gap • The Mental Health Care Act disallows discrimination against the psychiatrically ill • Medical schemes isolate psychiatric benefits, lower allocations for psychiatry vs other disciplines • Only eight of the 52 medical schemes evaluated by the Psychiatric Commission were found to have placed psychiatric benefits in the general pool of benefits. (2000)

30. Mental Health Care Act The gap • Department of Psychiatry at the University of Stellenbosch conducted a study • Compared medical scheme benefits for major depressive disorder and ischemic heart disease • Survey of the benefits of 57 schemes and 130 options in South Africa revealed a 20-fold difference in in-hospital benefits, favouring members with heart disorder. • The study showed that 73.8 % had no limits on in-hospital benefits for the treatment of the heart disorder, while only 8.5 % had no limits on in-hospital treatment of major depressive disorder. • 7.7 % offered unlimited out-of-hospital benefits for the heart disorder, but only 2.3 % did so for the psychiatric disorder. • The survey was based on schemes’ 2001 and 2002 benefit schedules.

31. Promotionof Equality and Prevention of Unfair Discrimination Act • Promotionof Equality and Prevention of Unfair Discrimination Act, Act No. 4 of 2000, applies to persons with disabilities and protects such individuals against unfair discrimination based on such disabilities. • In particular, such individuals are protected against being denied “any supporting or enabling facility necessary for their functioning in society”, as well as ensuring that they are afforded the right to “enjoy equal opportunities”. • The Act goes even further, by specifically stating that it is an unfair practise to “unfairly deny or refuse any person access to health care facilities or to fail to make health care facilities accessible to any person”. • Patient letter

32. Medical Schemes Act Medical Schemes Act (Act 131 of 1998), Section 24 (2)(e) “The medical scheme does not or will not unfairly discriminate directly or indirectly against any person on one or more arbitrary grounds including race, gender, marital status, ethnic or social origin, sexual orientation, pregnancy, disability and state of health;”

33. Medical Schemes Act Regulations promulgated in terms of the Medical Schemes Act, Act No. 131 of 1998 : • “If managed health care entails limiting coverage of specific diseases – • a) such limitations or a restricted list of diseases must be developed on the basis of evidence-based medicine, taking into account considerations of cost-effectiveness and affordability; and • b) the medical scheme and the managed health care organisation must provide such limitation or restricted list to health care providers, beneficiaries and members of the public, upon request.”

34. Medical Schemes Act Limited coverage of diseases The gap: • No evidence-based explanation has been provided to date for the capping of psychiatric benefits

35. The cost impact of uncapped benefits The effective treatment of patients with severe depression results in markedly reduced rates of visits to doctors for non-psychiatric services. Findings published in a report by the Department of Commerce of the United States of America in 1992 and are reiterated in studies by Muneford et al 1984, Hankin et al 1985, Borus et al 1985, Stoudemirre et al 1986, Holder and Blose 1987A and B, Meien and Pittmann 1989, van Korf et al 1990, Levenson et al 1992 and Rice and Miller et al 1993. All these studies have shown that initial adequate psychiatric treatment results in global savings of approximately 20%, with up to an 85 % reduction of hospitalisation days. A South African pilot project of an average size medical scheme revealed a reduction of 50% of total utilisation cost, if patients with psychiatric disorders were treated adequately. Case report 2 of Shadow White Paper

36. Medical Schemes Act “15I. Formularies.—If managed health care entails the use of a formulary or restricted list of drugs— • (a) Such formulary or restricted list must be developed on the basis of evidence-based medicine, taking into account considerations of cost effectiveness and affordability; • (b) the medical scheme and the managed health care organisation must provide such formulary or restricted list to health care providers, beneficiaries and members of the public, upon request; and • (c) provision must be made for appropriate substitution of drugs where a formulary drug has been ineffective or causes or would cause adverse reaction in a beneficiary, without penalty to that beneficiary.

37. Medical Schemes Act 15I. Formularies. The gap • Lists are not readily made available • The basis of formularies is questionable (Stds for managed health care) • Insufficient/no provision made for appropriate substitution

38. Medical Schemes Act 15I. Formularies. • Accepted first line treatment for patients with panic disorder is SSRIs. Older Tricyclic Antidepressants (TCAs) are often recommended in formularies as first line treatment. Such patients are particularly sensitive to side effects and do not respond because of the side effect profile of TCAs. If such patients are able to take newer and improved medication, their overall treatment would be more effective without major side effects. • The accepted first line treatment to control symptoms of behavioural and psychological symptoms of dementia is atypical antipsychotics. Medical schemes will only allow the use of typical antipsychotics. Often these patients are very susceptible to developing Parkinson’s syndrome on the typical antipsychotics, as well as other side effects. • The cost of non-compliance? • The cost of controlling side effects? • Case report 5 of Shadow White Paper

39. Patients Rights Charter 2. Participation in decision-making • Every citizen has the right to participate in the development of health policies and everyone has the right to participate in decision making on matters affecting one’s health. • Gap • Patients are not consulted in any decision making process i.e. benefit design, formulary/protocol guidelines, choice of treatment • Access to health care • vii. Health information that includes the availability of health services and how best to use such services and such information shall be in the language understood by the patient. • Gap • Insufficient efforts on the part of medical schemes to inform members of new benefit designs and the impact of the PMBs

40. Patients Rights Charter 4. Knowledge of one’s health insurance/medical scheme • A member of a health insurance or medical aid scheme is entitled to information about that health insurance or medical aid scheme and to challenge, where necessary, the decisions of such health insurance or medical aid scheme relating to the member. • Gap • Members of medical schemes are not informed in good time of changes in benefit design so that they may change options • Premium increases are effective before written approval is obtained from CMS

41. The Impact of PMBs • Some medical schemes provide bare minimum of treatments- switching of medications that patients were stabilised on • Some patients not covered for chronic illnesses that were controlled • Patients needing to “buy up” in order to have access to treatments for illnesses not covered under 25 conditions

42. The Impact of PMBs • No written agreements in place between medical scheme and DSP, hence patients not aware of what standard of treatment to expect and hence no recourse • Price differential between accessing services from a non-DSP

43. Proposal In particular, South Africa should consider: • Whether parity in the allocation of health benefits and the prohibition of capped or limited benefits as currently practiced, would have a significant cost impact on the medical insurance industry, which international law reform suggests would not be the case[1] • Whether the current capping of mental health care benefits constitutes a prohibited form of discrimination, both in regard to the Constitution and the Mental Health Care Act • [1] According to the Timothy's Law Organisation figures, obtained from an actuarial study estimates that premiums for full coverage will only increase by $1.26 a month, according to estimates.

44. Proposals • Research into the establishment of a comprehensive National Mental Health Strategy, comprising both the public and the private sectors, in which best practice mental health policy, treatment and protocols are the cornerstone of health care delivery for mental health care users • Legislative change and development where it is found that either the interests or needs of the mentally ill are unsuitably and inadequately provided for

45. Proposals • The law as it pertains to the mental health care user accordingly requires reassessment in the following respects: • how benefits are structured • how facilities are licensed • treatment protocols • formularies • PMBs

46. Proposals • All medical schemes should use the Standard Treatment Guidelines for Common Mental Health Conditions issued by the South African Department of Health, as also other internationally recognised guidelines for the treatment of psychiatric disorders • Matters which affect the professional relationship between doctor and patient and which influence the quality and level of care of the patient, should vest with the Health Professions Council of South Africa and not the Council for Medical Schemes or individual medical schemes • The limitation of benefits should be considered as a matter of last resort in containing costs • The effective treatment of psychiatric disorders should be dictated by treatment guidelines, as opposed to the availability of funds • The Prescribed Minimum Benefits in Annexure 2 and the Algorithms in Annexure 3 to this document should be incorporated in the appropriate legislation

47. Public Sector Challenges • Not all primary care clinics treat psychiatric illnesses • Access to primary clinics that treat psychiatric illnesses is limited • Specialist psychiatric clinics have been closed • 84 Psychiatrists in public sector • Access to medication severely impeded • Tertiary EDLs • Primary EDLs • EDLs between provinces

48. Public Sector Challenges • Case report 1 of Shadow White Paper illustrates the burden of the overflow of private sector patients on the public sector • Also illustrates the lack of adolescent psychiatric facilities and impact of administrative duties on the delivery of treatment

49. Batho Pele Principals • Consultation • Citizens should be consulted about the level and quality of the public services they receive and, wherever possible, should be given a choice about the services that are offered. • Service Standards • Citizens should be told what level and quality of public services they will receive so that they are aware of what to expect. • Access • All citizens should have equal access to the services to which they are entitled.

50. Batho Pele Principals • Courtesy • Citizens should be treated with courtesy and consideration. • Information • Citizens should be given full, accurate information about the public services they are entitled to receive. • Openness and transparency • Citizens should be told how national and provincial departments are run, how much they cost, and who is in charge.