The focus of the bloggers from the Association of the Substitution Treatment Advocates of Ukraine [1] [ukr] is to discuss the issues that affect their lives the most. The continuity of substitution treatment [2]is one of these issues. The central level health care authorities had issued directives in these regards in recent times. However, in most regions of Ukraine, still the only place where substitution therapy patients can receive the medications they depend on are special Methadone [3] distribution sites and no other medical establishments can provide it. But what happens if a patient is sick and is not able to personally come to the distribution site to receive the medication, or even when his medical conditions require staying at a hospital?
[4]Activist Victoria Litsova during the training
Activists of the Association believe that documenting the stories of real people, who are suffering from the bureaucratic red tapes and negligence of medical personnel, and making these stories public would help change the situation. Blogger Victoria Lintsova [5]from Kirovograd posted a story describing how she attempted to help one of her fellow patients when she needed urgent hospitalization. She posted [6]:
Надеюсь, что этому человеку помогут в больнице. Очень верю ( и сделаю все, что от меня зависит, чтобы и в нашем городе соблюдались пациентские права учасников ЗПТ). […]
…мне позвонил один из участников программы ЗПТ Кировоградского сайта и сообщил, что наш пациент, принимающий метадон находится дома в очень тяжелом состоянии и третий день не может самостоятельно добраться на сайт. […]. В первую очередь я позвонила нашему лечащему врачу программы ЗПТ, объяснила ситуацию… Врач ответил мне, что, учитывая весьма тяжелое состояние пациента, для того, чтобы продолжать ему лечение, необходимо собрать медицинскую комиссию, а это сложно, и вообще – доктор убежден, что пациенту уже « все равно», абстиненции он не испытывает, потому как он при смерти…
I hope that this guy would be helped at the hospital. I do believe (and will do everything I can) so that the rights of substitution therapy patients would be observed in our city. […].
…I got a phone call from one of the participants of the substitution therapy program in Kirovograd and learned that our fellow Methadone patient had had very severe medical conditions for three days and had not be able to go to the site personally. […] First of all I called our doctor from the substitution therapy program and explained the situation… the doctor responded that, taking into consideration the sever conditions of the patient, to continue the treatment he needs to get together a special medical commission and this is a very complicated procedure, and, generally speaking he doctor was sure that it does not really matter for the patient, he does not suffer from the abstinent syndrome any more as he is actually dying …
Victoria was very scared by the answer as she imagined that if something like this happened to her she also would not receive the medication she depended on.
Thanks to the efforts of the activists, the same day the patient was placed in the intensive care where doctors promised to terminate the abstinent syndrome with morphine and tranquilizers.
After publishing the story Victoria decided to investigate the real situation with continuity of the replacement therapy in her city. She talked to the doctors and found out that the main reason why the hospitals do not want to provide Methadone to the patients is the time consuming paperwork associated with dealing with drugs. First, the Methadone site doctor should attend the hospital and provide the training to local medical personnel in how to deal with the medication, than there should be a special contract signed between two medical establishments on provision of the medication. So, most of the doctors do not want to deal with this.
What amused Victoria the most was an opinion expressed by one of the doctors that the patients in general have no objections to visiting the Methadone sites personally. This statement contradicted much with the reality Victoria observed. She wrote [6]:
Я видела неоднократно, как они «с удовольствием» добираются на сайт, и поднимаются на 4 этаж с трубками в животе …, с язвами на ногах …, на костылях, через несколько часов после родов, с высокой температурой и т.п. Я ведь сама пневмонию решила лечить на дому, отказавшись от госпитализации из-за того, что из дома поехать на сайт легче и ближе, чем из стационара больницы…
[…]
Возвращаясь к судьбе человека, с которого я начала повествование – хочу отметить, что у него ВИЧ-позитивный статус и туберкулезный плеврит. При последней госпитализации, как и многие наши, самостоятельно добирался на сайт, пока мог.
I saw many times how patients ‘were happy’ coming to the methadone site having tubes sticking out from their stomachs, with sores on their legs, with crutches, having a high temperature, etc… I personally, when I had pneumonia, refused to stay in the hospital and preferred to stay at home as my home located closer to the site than the hospital…
[…]
Talking about the patients I wrote above I would like to highlight that he was HIV positive and had tuberculosis pleurisy. When he had been taken to the hospital before, he, like many other patients, also went to the site until he could not walk any more.
In a week Victoria wrote a comment to her post saying that this patient has died.
Victoria finished her post with reporting the steps she made to change the situation. After receiving technical and legal advice form the association Victoria sent a few appeals to the health care authorities drawing their attention to the problem. She believes that if everybody would also appeal than with a time the situation would change for better.
A blogger Pavel, commenting to Victoria’s post, expressed doubts that just appealing to the health care authorities is enough. He believes that to change the situation for better the patients have to go to a court. He posted [6]:
… Когда среди нас найдется хорроший адвокат, готовый подать иск в суд и как 2х2 доказать, кто виноват и из-за чего, тогда, поверь, зашевеляться все. ….Сочувствую. У нас на сайте подобных примеров уже более 2 десятков. Статистика ужасна, но мы (на сайте) сами её ведём, складываясь на похороны…