Information helps people with AIDS live longer<\/p>\n
By Chris W. Green<\/p>\n
JAKARTA (JP): All our ignorance brings us closer to death.
\nAlthough this quotation goes back more than 60 years, it is
\nsurely applicable to people with AIDS (PWAs) today. Studies have
\nshown that ill-informed PWAs die sooner than those who understand
\nthe condition and its treatments. Similarly, PWAs cared for by
\nexperienced and knowledgeable doctors live longer -- by as much
\nas more than one year -- compared with those whose doctors know
\nlittle about the condition.<\/p>\n
But worse, ignorance is a breeding ground for discrimination.
\nPeople who don't know their rights, or worse don't know that they
\nhave rights, are easy to discriminate against. We all have
\nexperience here in Indonesia of bureaucrats who exploit the
\npublic's lack of knowledge of their rights.<\/p>\n
Often we assume there is no legal basis for what we consider
\nshould be our rights but this is by no means always correct. And
\nit is certainly not true in regard to the rights of PWAs.<\/p>\n
Indonesia was one of 41 countries that signed the Paris
\nDeclaration at the AIDS Summit there exactly four years ago.
\nAmong other statements, this binds the signatories to "...
\nprotect and promote the rights of individuals, in particular
\nthose living with or most vulnerable to HIV\/AIDS", and to ensure
\nequal protection for them under the law.<\/p>\n
But international declarations are "two a penny", you may say.
\nHow does this actually affect PWAs in Indonesia? We frequently
\nhear from journalists and others who should know better that
\nthese good words are not backed up by national legislation; that
\nthere is no Indonesian law covering discrimination against PWAs.<\/p>\n
The well-kept secret is that rights of PWAs are clearly
\nsupported by the Indonesian National AIDS Strategy. Amazingly,
\nthis goes back to June 1994, when it was signed into law by the
\ncoordinating minister for people's welfare. (The full English
\ntext of the Indonesian National AIDS Strategy is accessible on
\nthe World Wide Web at http:\/\/www1.rad.net.id\/aids\/strateng.htm)<\/p>\n
While this document is not perfect (what law is?), it does
\ncover the main points. For example, one of its three stated
\nobjectives is to "...minimize personal suffering, as well as the
\nsocial impact of HIV\/AIDS throughout Indonesia". And among nine
\nbasic principles, it not only confirms the right of every person
\nto accurate information but it also explicitly requires that PWAs
\nbe treated without discrimination.<\/p>\n
The pity is that few PWAs -- or, indeed, organizations
\nsupporting PWAs -- are even aware of the existence of this
\ndocument, let alone its contents.<\/p>\n
Ignorance that certainly brings them closer to death ...<\/p>\n
Of course, as we all well know, there is a vast gap between
\nlegislation and implementation. Part of the problem is that the
\nconcept of discrimination is not well understood by many people
\nin Indonesia. This was brought home to me in a meeting several
\nyears back in which we were trying to translate the theme for the
\nCandlelight Memorial. It referred to "discrimination", which we
\ntranslated (naturally) as diskriminasi.<\/p>\n
But one of the groups from outside Jakarta asked us what this
\nterm would mean to the average person in Indonesia. If people do
\nnot expect to have rights, how can they feel discrimination?<\/p>\n
Of course, this problem is by no means limited to AIDS -- the
\nfeudal background makes this a widespread challenge, and those in
\npower have little incentive to change this. But AIDS activists
\ncan make a difference. We can and must disseminate correct
\ninformation -- directly or through the mass media. We can
\nintroduce concepts -- and we can defend those whose rights have
\nbeen ignored.<\/p>\n
One innovative response to this is the current weekly
\ntelevision series called Kupu-kupu Ungu (The Purple Butterfly,
\nTuesday, 9:30 p.m.) on RCTI. Produced by Nano Riantiarno and
\nfunded primarily by the Ford Foundation, each week this provides
\na vignette of the experience of a doctor in Indonesia
\nspecializing in AIDS. In a dramatic format, it attempts to
\nuncover the myths associated with HIV and AIDS, and to reinforce
\nthe rights of PWAs.<\/p>\n
Each episode is loosely based upon real events which have
\noccurred in Indonesia -- for example the case of parents who
\nrefuse to let their children attend school with an infected
\nchild, or the case of a hospital which attempted to prohibit one
\nof its doctors from treating PWAs.<\/p>\n
Although soap operas in the 1990s frequently include a
\ncharacter with AIDS, this is a new approach, and it will be
\ninteresting to assess its success following the end of its run in
\nDecember.<\/p>\n
This program highlights the fact that, while some
\ndiscrimination against PWAs is based upon moral judgments, much
\nalso stems from ignorance -- and the fear engendered by this. If
\nnurses -- and, indeed, doctors -- do not know how AIDS is spread
\nand how it is not spread, they will naturally be afraid and
\nprefer to avoid treating PWAs.<\/p>\n
In such cases, the solution is not to invoke the law; it is to
\nprovide information so that people can protect themselves, and
\nfeel comfortable in supporting people with the condition.<\/p>\n
Several years back, I asked the matron of a hospital in
\nJakarta why most of the staff were so supportive of PWAs who were
\ntreated there. She told me that when the first person with AIDS
\nwas admitted, many of the staff were very concerned -- and
\nafraid. So she started a crash education campaign, that involved
\nnot only medical staff but also cleaners, caterers and
\nadministrators. Once they were aware of the real situation, the
\nproblem all but disappeared.<\/p>\n
And so we come full circle back to the disease of ignorance
\nand its treatment: information. Of course, we can never force
\nanyone to take medicine but we do need to make sure that it is
\naccessible to all.<\/p>\n
Information is the cheapest form of treatment and is one we
\ncan all work together to offer to those who need it.<\/p>\n
The writer is editor of Warta AIDS news bulletin.<\/p>", "url": "https:\/\/jawawa.id\/newsitem\/information-helps-people-with-aids-live-longer-1447893297", "image": "" }, "sponsor": "Okusi Associates", "sponsor_url": "https:\/\/okusiassociates.com" }