We are with You

November 23 to 25 saw the work of the Second International Conference of the AIDS-servicing organizations of the East-European countries. It was held in Kiev and hosted representatives of 11 states, including doctors from some Ukrainian AIDS centers. The conference was initiated by Kiev Center of mutual support for the HIV/AIDS-affected «We are with You».

It was made clear in the participants’ speeches that in most countries of our region the HIV-positive invariably face certain difficulties and the necessity of waging struggle for their rights and life itself. Nonetheless in Latvia, Lithuania, Poland, Estonia and Moscow people with HIV infection do have access to the advanced forms of treatment bankrolled by the state; groups of mutual support are active, rendering moral and psychological help to those who are burdened with HIV.

It’s a cause of deep regret that Ukraine is still looking as one of the least well-off countries on this background. Here the HIV epidemic is spreading at a catastrophic rate and hence the situation is awful. During the «round table» discussion that was organized by the municipal administration of Kiev and took place within the framework of the conference, the head of the Ukrainian center of prevention and struggle with AIDS, professor A. Sherbinskaya gave the following outline of the situation: «The number of HIV cases disclosed in Ukraine from 1987 to 1992 was 182. The virus was passed on through homo- and heterosexual contacts. But the year of 1995 marked a new stage of the epidemic, when HIV began spreading at a threatening rate among drug addicts using injections. Since then we’ve started to disclose from 800 (and lately - 1000-1200) fresh cases of HIV infection. Currently over 22 thousand carriers of HIV infection are officially registered in Ukraine, as well as 40 thousand persons who have shown the presence of antibodies in their organisms but who have not undergone a thorough clinical check-up.

From these 22 thousand, addicts account for 85% and 10% belong to persons who got infected via sexual intercourse. This means that the infection spreads from the breeding ground created by junkies to wider layers of the population - their wives and friends, or from mothers to children etc.

By our prognosis, by 2000 the number of HIV-infection cases in Ukraine will reach 100 thousand and the number of AIDS cases will approximate one and a half thousand. This problem is utterly acute for us at the moment».

As in the vast majority of cases, the basic difficulty in this struggle is the shortage of material means. Ukraine lacks many vital methods of diagnosing HIV and medications for its treatment, and social protection of the HIV-positive is all but absent. Just consider this fact: social help for a child with HIV is as tiny as 19 grivnas ($ 5,5) a month.

My question concerning the financing of the works on prevention and struggle with AIDS was answered by Ms. Shcherbinskaya this way: «The Ministry of Health of Ukraine has come up with a new national program which is now being under consideration by the Ministry of Finance. It comprises the combined therapy for the 50 HIV-infected to be treated this year and 100 more - next year, one course being worth of $6900. Still I can’t say what this bankrolling will be and when it will get started».

Very hopeful sounded the news that Ukraine has at last gotten the anti-virus medications registered ( 6 preparations in all) which are necessary for conducting up-to-date therapy of HIV infection and which have been prolonging the life of many people in the world.

Yet the economic hardships are not the only thing that the HIV-positive are confronted with. Valentina Silvestrova , doctor of Donetsk AIDS center is speaking up: « The rights of those with HIV infection are to be protected - and not only in the area of medical treatment, but also in the sphere of employment, relations with the family and neighbors.

The new project of staffing medical institutions of Ukraine does not include the anti-AIDS centers and thus we appear to be an illegal structure. And our patients get turned down along with us inasmuch as regular doctors - due to their incompetence and lack of psychological training - are fearful of getting in contact with them».

And here are words of Helen Purik, specialist in HIV/AIDS issues, cofounder of the Ukrainian center of prevention and struggle with AIDS, who has been dealing with this problem for as much as 25 years: «I am well aware of what an uphill work it is to make oneself heard by state structures in the area of HIV/AIDS problems. They say that our children die from leukemia induced by Chernobyl disaster, that our elders have not enough meal - it’s true, yet everyone should have equal rights to social assistance and no one is allowed to regard those with HIV/AIDS as inferior people only due to the fact that this problem - as officials put it - is quite special. And our mission, as well as yours, is to prevent discrimination of people with this diagnosis».

A representative of the UNO/AIDS program revealed that the experience of other countries in solving this problem makes clear that the efforts of the public health organizations alone are not sufficient since it is not just a medical issue. To solve it, the wide public is to be involved into the work, and not only governmental organizations are to participate but non-governmental ones too. The HIV-infected themselves should be included in the process of this struggle». This remains to be beyond the comprehension of officials in this country.

Very sadly, the «round table» was never honored by presence of the authorities. «Who will give an ear to our words?» - this question of specialists and patients with HIV was addressed to the emptiness.

Nikolai Nedzelsky, president of the Russian «Imena» (NAMES) fund, is speaking: «Trust between the government and the people, between a doctor and a patient, is lacking. It’s up to us to try to solve this problem, to make the cumbersome state system face the people. We’re not willing to be just receptacles accepting pills thrown by doctors. We don’t want AIDS to be just a trump in the dirty game of politics. We don’t want our friend to die. We are not willing to die!»

The holding of the conference was supported by the International «Renaissance» fund. Taking its results as a groundwork, the Center «We are with You» is planning to publish recommendations containing alternative methods of maintaining health of the HIV/AIDS-infected.

Tel/fax of the organization: (044) 228-73-85

P.S. concerning the personal matter: Anyone who has never been in close contact with the HIV problem, as a rule views the HIV-positive as something dangerous and so tries to avoid close communication. And it’s understandable: subconsciously the body seeks to shun the risk - that risk that cannot be seen but the name of which is known to everyone of us.

Still, the soul curbs the scare when it accepts another person’s pain and problems, when it accepts them as its own.

Over the three days of the conference work I developed close relations with one person - and this was the experience for me, the process of going through the stages of fear on the level of self-preservation instincts, up to closeness. As the one free of HIV, I needed this relation which was of big importance for me - so that I could understand: We are with You, I am with YOU!

Andriy Maymulakhin