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When HIV patients have to walk days for antiretrovirals

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HEALTH/Kigali: In Gisagara district – Southern province – bordering Burundi, Daphroza, 45, looks frail with a visible rush on her face and arms. She has a CD4 count or the immune system's strength at 180 – less than the 200 minimum. According to doctors, Daphroza’s CD4 level is very worrying. But that is not the end of her troubles. As she narrates her situation, the mother of two daughters - aged 17 and 19, takes a deep cough holding her chest – an indication of the pain she is facing. Her daughters have apparently refused to go for testing – so their status is not known.

Every mid-month, Daphroza has to walk to Huye district on a journey that takes her a whole day to pick her 15-days ARV dose. “I have to start my journey a day before, spend a night in Butare (Huye town) - in time for my appointment with the doctors at Kabutare (hospital)”, she explains.

Daphroza is among up to 73 HIV positive patients in Nyanza sector of the same district – all grouped in the association Akabando k’Iminsi. As they speak, they sound rejected and forgotten. They include the elderly, girls and children.  

Despite their varying conditions, they all have to walk to Huye district – about a two-hour drive away to have their bi-monthly dose of ARVs.  

All of them are on the life saving medication as well as 3 children. However, 65 of Akabando k’Iminsi members are females. In Gisagara district, there are about 50 associations of HIV patients bringing together more than 1000 people. There are only two closest ARV centers – with the other in Kibirizi – hours away as well.  

In Huye town – which is nearer, as they explain, those that go there have to get their doses from Kabutare hospital. The National University of Rwanda hospital is another place where people from other places visit for ARVs – among the few that are in the southern province.

The road to Gisagara heads to Burundi but it is rare that a vehicle is seen except for government cars or those owned by NGOs. People that have bicycles use them for their businesses or even individual transportation.

The medical team that distributes the ARVs moves down to Kibirizi health center – but this is farther than walking to Huye town, according to the association members, seated at an assembling place as they narrate to RNA.  

According to the Treatment and Research for HIV/Aids Centre (TRAC), the government and donor funded agency charged directly with the ARV program, the difficulty with which rural areas have in accessing the much needed ARVs is known but can do little at the moment.

“We are very aware of the difficulties that those that take antiretrovirals but are living very far away from the certified health centers that prescribe and distribute the medication”, explains Dr. Jules Mugabo – in charge of the program.

“But even now, we have expanded the program so fast from just four main provincial hospitals in 1999 to about 143 health centers currently”, he says.

More than 53.000 on ARVs

Between 1999 and 2003, only eight-hundred (800) HIV positive patients – who were actually footing their own bills - were accessing medication. The ARV program was only at the National University of Rwanda hospital in southern Rwanda, the Kigali Main Hospital, the up-scale King Faisal hospital and the Kanombe Military hospital.  

Latest figures from TRAC indicate that there are slightly above 53.000 patients country-wide on ARVs. Among them, about 5000 are children.

Kigali and the Western province have the highest figures of ARV recipients at 17.000 and 11.300 respectively. The Northern Province has the lowest number of people on ARVs. However, this province has the highest general population level.   

TRAC officials say the numerical distribution of access centers depends on the number of HIV positive people in that province.

HIV prevalence in Rwanda now stands at 3% translating to about 290.000 patients. TRAC officials also say some 40 percent need the doses.

Treatment decisions are often based on Viral Load and CD4 count. Normal counts range from 500 to 1500. A normal CD4 count in a man without HIV infection will be approximately 400 to 1200 cells per cubic millimetre of blood, and 500 to 1600 in women, according to experts.   

Dr. Mugabo says the challenge is limited resources that do not permit the expansion of the program to the ‘door steps of all the patients’.  

“In the next two to three years, with the current commitment from government and its partners, patients should be having their doses from meters away”, he says.

This means that for now, elderly Ms. Mukeshimana of the same association Akabando k’Iminsi, who is parenting a 16-year old HIV positive girl, will have to continue carrying her to Huye town for her monthly doses.

Mukeshimana and her own daughter of the same age are not infected but she cares for the 16-year old – with whom they have no family relationship – only out of goodwill.

No food, no support

Ms. Mukeshimana is member of Akabando k’Iminsi on behalf of the girl. “This girl was born in 1992 like my daughter but she looks very small, weak and sickly – and looks very small compared to her age”, explains Mukeshimana.  

“I have no money but she needs the medication and she cannot go alone. So I have to always escort her to Huye. Sometimes I request people with bicycles to carry for me as I walk but that is rare.” She narrates.

Mr. Saidi, the head of the association along with other members are of the view that the local health center in the Nyanza sector area - that has a Voluntary Testing and Counseling service – could be allowed to serve the ARVs as well.  

“We just wish that the doctors can be given cars so they can come over to our sector’s health center with the doses – so we can meet them there”, he says.

It is a suggestion that campaigners like Mr. Mulisa Tom and local area officials have preferred but to no success. Mr. Mulisa is the HIV/Aids and Human Rights Outreach Officer for the National University of Rwanda Legal Clinic.     

However, Dr. Mugabo from TRAC says there is a plan to decentralize the ARV program completely but that will come along with resource injection.  

“In fact even the center where that association (Akabando k’Iminsi) are getting their doses arose after we established an outreach program whereby doctors move down (to closer centers) to find the patients”, he explained.

“It needs training doctors and nurses for the task and put in place resources for easy safe-keep of the medication – all of which cannot just come immediately”.

The government, with financial support from a variety of sources including the Global Fund, the World Health Organization, the World Bank, bilateral donor agencies and private funds such as the Clinton Foundation, is able to provide ARV treatment to people in need.  

Doctors and nurses are being trained, and a growing number of health clinics are able to treat AIDS patients.

But for Daphroza - who is having a critical CD4 count - that may come too late. She looks under-fed, weak and largely depends on very meager support from the association in form of food and money. The association members have been trained on income generating and now have up to Rwf 100.000 (about $170) on their account.

They get this income from contributions, working together and interests on small loans they offer to members from the association account. They have a large cassava plantation and each member has goats.  

As RNA visited the area, Daphroza had just been carried to Huye for her dose by members of the association. They say she has even been abandoned by her family who seem to be tired – as she is often sick – another typical case of stigma. She was supposed to have seen a doctor but was unable due to her condition.  

Depending on how close one may be to an urban area, ARV recipients that in bad state get food from numerous organizations – often for about six months - which is not the case with patients in rural Gisagara district.

People living with HIV/AIDS may be unable to follow optimal food and nutrition recommendations for ARV therapy due to lack of access to required foods. These factors also contribute to drug regimen non-adherence, a problem in some ARV programs that can lead to substantial decline in health, increased frequency of opportunistic infections, and faster progression of HIV/AIDS, according to experts.

Six months ago, the Catholic relief agency CARITAS provided food for 17 members of Akabando k’Iminsi who were in very sick state – but that has been no more.


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