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HIV Expert Patient

In a bland and sterile hospital room in the Southwest Region of Cameroon, two women, both HIV-positive, sit at a table talking to each other. One of them is Bertha, a volunteer for a local micro health insurance scheme and the other has come for counseling at the treatment center for persons living with HIV. Bertha is a smallish woman who more than makes up for her size with her spirit. Her respondent however is nervous and declines to give even a first name.

Bertha works as an “expert patient” at the Buea Regional Hospital Annex.

The expression “expert patient” is used by micro health insurance schemes known as Mutual Health Organisations to describe someone living with HIV, the virus that causes AIDS, taking antiretroviral drugs and willing to go public about their HIV status under the umbrella of the Mutual Health.

Describing her duties, Bertha says, “I come to the treatment centre twice a week and I talk to clients on a one-on-one basis. I also have to make myself available for radio or TV interviews if need be.”

Mutual Health Organisations use expert patients, generally to encourage positive living for persons living with HIV, but mostly to promote commitment to antiretroviral treatment – a mixture of drugs essential to managing HIV.

The Regional Advisor charged with the promotion of Mutual Health Organisations in the Southwest region of Cameroon, Samuel Monono, says “we use their experiences as people living with HIV and AIDS and their exposure to the antiretroviral drugs to advice … other patients who are about to or who are equally taking these drugs.”

The activity receives funding from the German Technical Corporation, the GTZ.

UNAIDS estimates that only about 20% of more than five hundred thousand people living with HIV or AIDS in Cameroon, have access to care and treatment.

Monono says finding expert patients is challenging because stigmatization is still rife in Cameroon and not many persons are willing to say they are HIV-positive in front of cameras and microphones.
“It takes a lot of bravery to come out, talk about your health, talk about your experiences without reserving the greater part”, he says. Especially when you are not paid for it.

As an expert patient, Bertha gets 25000 FCFA, approximately US$50 a month to cover her transportation costs.

About her reason for volunteering, Bertha says “I’m doing this because of my own experience.” After overcoming self-stigmatisation and that of the public, she has been able to remain positive and she feels the need to help other HIV positive persons do the same. “You have only to fight it for yourself but also to extend it to your brothers and sisters”, she says.

Bertha wants no money for her work. Her reward is in seeing hope in the eyes of those she has helped. And so she smiles when her timid respondent says “since I started coming to the treatment centre and talking to Bertha, I am not so worried anymore because I know that I’m not alone.”

Comments

jadefrank's picture

Brave Bertha

Hi Ada,

Thank you for sharing this inspiring article on Bertha and 'expert patients'. What a courageous woman and a role model for everyone who must overcome self-stigmatization.

It is hard to swallow the data you've presented, that only 20% of people living with HIV and AIDS in Cameroon have access to treatment. I hope that with women like Bertha and like you who are speaking out to bring awareness to this issue and the importance and success of treatment, more people in Cameroon and other parts of the world can have access to proper treatment.

I always enjoy reading your journals.

Warm regards,
Jade

Nelly2.0's picture

Yes, Brave Bertha!

Hi Jade,

It is indeed hard to swallow that only 20% of persons living with HIV and AIDS have access to treatment in Cameroon. And stigmatization is very much still very present in Cameroon so when I met Bertha, I knew I had to tell her story.

And you would also be shocked to know that there are an increasing number of persons abandoning antiretroviral therapy to pursue so called "divine healers". I think I should write something about that sometime.

thanks for your comments.

Kindest regards,
Ada

Auma's picture

Brave,Brave,Bertha!

Thanks for sharing this! Living with stigma is the greatest killer.I am glad to know that Bertha is an inspiration to others.If more people living with AIDS came out to share their experiences with others,then they would live knowing that they do not have a 'death warrant' as they may be rated.

With respect for Bertha,

Leah.

Nelly2.0's picture

Stigma is indeed the greatest killer

Hi Leah,
Stigma is still very high in Cameroon and eventhough there is much information on the media about HIV and AIDS, so many people still have misconceptions about HIV.

Thanks for your comment

Ada

Nusrat Ara's picture

It is really great that we

It is really great that we have women like Bertha. Her courage and commitment is commendable. I wish more women were like her. Hats off to her.

And thank you Ada for bringing out her story.

Regards

Nusrat

Nelly2.0's picture

So great

Hi Nusrat,
If there were more people like Bertha we have been winning one battle in the war agains HIV – stigmatization. Thank you so much for your comment

kindest regards
Ada

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