Harm reduction: meeting the needs of hard-to-reach individuals
26 June 2018
By Bangyuan Wang, the Alliance’s senior technical advisor on HIV and harm reduction
For the Support. Don’t Punish global day of action, Bangyuan shares the stories of three people he has met during his time working on harm reduction programmes for people who use drugs. These personal testimonies demonstrate what can be achieved if we go above and beyond to meet the needs of individuals, versus what can happen if we just focus on the population as a whole.
Anna: even legal drugs can cause enormous harm
Anna lives on her own in a small 5th floor flat in a residential area of Kyiv, Ukraine. When we visit her on a Wednesday afternoon with colleagues from Alliance for Public Health (APH), she is alone at home cooking her lunch. She is probably in her early 30s and has been using drugs for some time. She has no job.
She suffers from the associated harms of using drugs: her left leg is swollen, with a huge abscess developing into a big ulcer. As a result, she can barely walk. When asked where her income comes from she bursts into tears - in such conditions she cannot even go downstairs to buy food for herself and there is no elevator in the building; the only way for her to get some income is to sell herself as a sex worker.
Anna has peers who come to her flat to share and inject drugs they procured from different sources. A social worker uses Anna’s flat as a peer education site to engage hard to reach people who inject drugs. She gets a small incentive for that, but it is far from enough for her to survive. She sometimes has to call the social worker to bring her some food as she is starving, either due to lack of money to buy food, or because she cannot go downstairs to buy food herself.
Anna uses clean needles and syringes provided by a local harm reduction programme, to prevent her getting HIV or other blood-borne viruses associated with sharing needles. Her abscess was mainly caused by the drugs that she is using; they are from the pharmacy and are supposed to be taken orally, rather than injected, as they contain substances that are not easily dissolvable. These drugs are legal, but still causing her enormous harm. You can smell the pus when you get close to her.
Without proper treatment, she may die in agony because the abscess is likely to develop into other complications such as septicaemia. Anna needs to have the abscess dressed properly, followed by antibiotics to save her leg, and her life.
Sichuan province: refused from hospital for suspected HIV
18 years ago, when I was working with Médecins Sans Frontières (MSF) in Liangshan prefecture in Sichuan province, China, I met a similar case to Anna’s. A man was sent to the local hospital with a huge festering sore in his left leg - a lot of the flesh on his thigh was rotten and you could see the bones. It was horrible, I was shocked.
The hospital suspected that he had HIV and refused to admit him. MSF spoke to the hospital and asked if we could borrow their theatre; they agreed but we were told to replace all the equipment after the surgery. This was not possible.
The MSF expat medical doctor and I were not sure we could change the man’s dressing outside of a surgical theatre. I was afraid and unable to do it as I am not a clinician, and I could not convince the expat doctor to do it. Our only choice was to bring him to the ‘skin disease prevention and treatment station’ where he was left in a storage room and given some antibiotics.
In 2000, HIV testing and treatment in China was not available in many places. The hospitals wouldn’t accept him because they suspected that he had HIV. We were only able to give him pain killers in addition to the antibiotics given by the clinicians in the skin disease prevention and treatment station. Due to a lack of proper dressing, the antibiotics did not work for him. The poor man died a few days later, after his relatives brought him back home. The experience was traumatising - I still remember his face in agony after 18 years.
Li: helped by a medical emergency assistance fund
One week after the trip to Kyiv, I heard a similar case again, this time, in Yunnan, China, where Aids Care China (ACC) works. A client of the community-based treatment centre in Yuxi, informed an ACC colleague that one of their friends had many abscesses and ulcers on both his legs as a result of injecting drugs and could not walk. No hospital wanted to admit him, worrying that he would not be able to pay the bill. The local hospital estimated that the bill would be around 50,000 Yuan, which is around US$ 8,000. Though he was partially insured by the national health insurance scheme, they worried that he would not be able to pay the 20-30% of that bill that had to come from his own pocket. His name was Li and he was abandoned by his family, waiting to die in a rented house of extremely poor condition. I was afraid that after 18 years not much has changed, and his fate would be the same as the man from Sichuan province I met back in the year 2000.
Luckily, ACC colleagues helped. For a few years, ACC colleagues have been donating a percentage of their salary to establish a medical emergency assistance fund. They approached the provincial AIDS care centre, which they have been working with for more than 15 years through the Red Ribbon Centre, to discuss the minimum cost and necessary treatment to save the man. He was then taken to this hospital and provided with proper treatment, but only the treatment that was absolutely necessary in order to limit the overall cost.
A week later, the man’s situation has improved dramatically. Most of the abscesses have gone and the ulcer has reduced in size. He needs to stay in hospital for just one more week and the overall bill is only 10,000 Yuan (about US$ 1,500) so far. ACC colleagues also helped him to claim the cost from the government health insurance scheme, which will cover more than 70% of the total medical bill. He will continue taking medicine for some time, but has also been enrolled onto the methadone treatment programme, to help him stop injecting.
Anna: now living with her sister
Back in Kiev, we followed up Anna’s situation with APH colleagues. They continued to work with the community-based organisations (CBOs) that work with Anna, and approached her family. The social workers were able to convince Anna’s sister to take care of her. She is now living with her sister. Anna has seen a medical specialist and is trying to find some money to pay for her medical costs. Anna will survive and hopefully, will recover totally from her wounds.
How can we ensure harm reduction programmes focus on the individual rather than the population as a whole?
In a world where funding for harm reduction is limited, the focus is often on reaching the population of people who use drugs as a whole, providing services such as opioid substitution therapy and/or clean needles and syringes with ambitious target numbers to reach.
But what about individual people who use drugs who - like in the stories you read above - cannot access clinics and health care for physical reasons, or because their behaviour is criminalised, meaning sometimes hospitals will call the police? How do we better ensure harm reduction reaches the hardest to reach?
The advantages of investing in a health system and universal coverage (health insurance, good infrastructures of hospitals and medical professionals, etc.) often only benefits the majority or the mainstream society who can access such services without stigma or physical barriers. Much more needs to be done to ensure that marginalised people, like those who are suffering from the harms associated with drug use, can access the same services, survive, and have a decent life.
It is necessary and recommended for us as harm reduction programme managers and advisors to include some contingency budget in our programmes to help individuals like Anna. These lives saved will be typical success stories of what can happen if you go above and beyond to meet the needs of individuals.
The stories of such individuals can be used to educate others about the harms of the substance that they are using. They could also become active peer educators, or advocates to demand policy changes: the legalisation of drug use, provision of safe drug consumption facilitates, or simply allowing people to take treatment (such as methadone) at home.
Such cases can then be examples of ‘person-centred harm reduction services’, and not simply another statistic.