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 CANCER SCREENING AND HIV 

Jane Namusoke (not her real name) used to go to her health facility for a refill of anti-retrovirals (ARVs) — drugs taken as the main treatment for HIV — that would last up to four months. But on one such trips last June, she was denied a full reload for declining to be screened for cervical cancer first. 

"I told the health worker that I was not prepared,” claims Namusoke.

The medical staffer of Mukono Health Centre 4 in Uganda's central district of Mukono reportedly told her point-blank that since she had declined to undergo screening for cervical cancer, then her refill of ARVs would be halved.

Namusoke stood her ground and her defiance saw her take home a restock of the vital drugs that would last only two months, before she could replenish again.

That experience left her wondering why she was "being punished for declining to be screened that same day, yet I was even in my periods, although I concealed it".

Cervical cancer occurs in the cells of the cervix — the lower part of the uterus that connects to the vagina. Screening is used to detect precancerous changes or early cancers before signs or symptoms of cancer occur.

While it is important, Namusoke felt she was not prepared to be screened that day. And her encounter is not unique.

Nancy Babirye (not her real name) claims to have faced a similar dilemma at the facility where she restocks her ARVs in Kawaala in Kampala. She, too, refused to succumb to the pressure of being screened for cancer of the cervix before getting a full refill.

"I encourage you to make a surprise visit to that facility. You will be amazed to document stories of young women who were given half refills for refusing to screen before they were ready,” she tells me.

Babirye feels that the service (of screening) is noble but that it is the way it is being implemented — using coercion — that puts off many people.

Coercion involves persuading someone to do something by using force or threats.

Some strains of human papilloma virus (HPV) have been associated with cancers, especially cervical cancer

'Ready or not'

When I visit the said health facility in Kawaala, most of the women I talk to say they had been boxed into choosing to be screened first for a full replenish of ARVs or otherwise. But because many of them knew their rights, they avoided being victims of coerced screening.

“Let women be empowered with knowledge and let them make informed decisions," says one of them, who like many others, asks to remain anonymous.

"I appreciate the fact that the implementing partners are looking at numbers [targets], but let these numbers not be achieved at a cost of human rights obligations."

Many of the women interviewed prefer anonymity out of fear of being victimized by the health facilities where they get their ARVs.

Cervical cancer is a type of cancer that occurs in the cells of the cervix — the lower part of the uterus that connects to the vagina

'It is unacceptable'

One of the women I talk to at Kawaala has been living with HIV for 12 years. She says that in past engagements, they were sensitized not to undergo cancer screening if they are not ready or prepared, and that nobody should force them because it is a human rights violation. 

They were advised that the recipient of care should be given full information about it in order for them to make informed decisions.

“If a person is forced, even treatment may not be successful because that person might not adhere. Full information motivates one to go through the entire process. Sensitization and counselling should be done before screening," she opines.

Another woman living with HIV says that some medical workers coerce them to screen in cunning ways, using “fallacious and deceptive statements to sweet-talk you, but would still insist on screening you straight away, ready or not”.

"Granted, it is okay to screen to detect individuals in danger of cervical cancer. But it is unacceptable, totally unethical and a human rights violation to coerce someone to screen," says Immaculate Owomugisha, a lawyer at Uganda Network on Law Ethics and HIV & AIDS (UGANET).

"Let someone know why you want to do this cancer screening first and let her consent. Force and intimidation will not get us to where we want to go."

A health worker at a local health facility in Kalangala district talking to clients about the benefits of cervical cancer screening

HIV advocates or activists who attend meetings of people living with HIV at community level confirm the existence of coercion of cervical cancer screening for women living with HIV.

And they warn that the practice is growing slowly and soundlessly.

I participated in some these meetings at various accredited health facilities that give ARVs to HIV-positive women to hear the claims of forced screening directly from them. Indeed, just like you have read already in this article, some of them attested to being pressured to undergo screen.

Activists say screening women without giving them adequate guidance and information is unbecoming behaviour on the part of service providers and should be checked. 

While screening for cancer of the cervix and the prostate is recommended for especially people living with HIV, it should not be used as a basis for providing a full refill of the lifesaving ARVs.

The argument is that many people walk long distances to access these drugs. Denying them a full reload just because they declined to get screened is a violation of their rights and it also breeds a culture of poor adherance to antiretroviral treatment.

During meetings with people living with HIV, the issue of demographics also comes up.

Some elderly women say they may be willing to be screened for cervical cancer without being coerced, but that the thought of having to be screened by young medical workers, who they see as their children or grandchildren, makes them uncomfortable.

As a result, many such older women leave the health facility without being screened.

A local health facility at one of the islands in Kalangala district

Cervical cancer and HIV

Cervical cancer is the leading cancer among women in Uganda, contributing to 40% of all cancer cases recorded in the country's cancer registry. 

Beyond Uganda, the disease remains a global concern as well: it is the fourth most commonly diagnosed female malignancy worldwide.

The fundamental advantage of screening is to detect individuals in danger of cervical cancer so as to prevent further progression of the disease. 

The reason HIV is associated with cancer is because people with the virus often have weakened immune systems, meaning they will have a greater chance of getting cancer.

Women living with HIV have a disproportionate risk of invasive cervical cancer, as they are two to 12 times more likely to develop pre-cancerous lesions. As a result of the increased risk, routine screenings are suggested.

A nurse at a local health facility in Kalangala counselling a client on cervical cancer screening

The stats

Cervical cancer is preventable yet many women continue to be undiagnosed, thus dying of the disease each year, for not preventing it and failure to detect it early and control it.

The prevalence of HIV among adults aged 15 to 64 in Uganda is 6.2%: 7.6% among females and 4.7% among males, corresponding to approximately 1.2 million people aged 15 to 64 living with HIV.  

The prevalence is higher among women living in urban areas (9.8%) than those in rural areas (6.7%).

Cancer screening is not something new. Women have been doing it before. But the probable driving force behind forced screening is around the targets set up by the implementing partners, like PEPFAR, that every woman or girl living with HIV and is eligible should be screened for cervical cancer.

PEPFAR (President's Emergency Plan For AIDS Relief) is a United States governmental initiative to address the global HIV & AIDS epidemic and help save the lives of those suffering from the disease.

Beatrice Ajon works with the International Community of Women Living with HIV Eastern Africa (ICWEA). Weighing in on the subject, she opines that a health facility is supposed to screen every eligible woman living with HIV, with eligibility being 25 years and above. 

If, for example, a health facility has 50 women living with HIV, 100% of those females should be screened for cancer, according to Ajon.

The 2019 World Health Organization (WHO) guidelines on testing state that coerced or mandatory testing is never appropriate, whether that coercion comes from a health care provider or from a partner, family member, or any other person.

Jane Nanyonga, who gets her services from Uganda Cares, says health education is offered first for a client to make an informed decision over whether to undergo screening for cervical cancer or not.

She sides with the school of thought that if cancer is detected early, it can be better managed.

Buvuma and Kalangala districts are reported to have the highest HIV prevalence rate of 30%, far above Uganda’s national prevalence rate of 6.2%. During my trip to this part of the country for this story, I find that complaints of coerced screening are not as common.

In some health facilities, such as Koome Health Centre 4 on the island of Koome, women living with HIV say it is their first time to hear of allegations of compulsory cancer screening.

One client says that for them, screened is only done after consenting.

Dr Edward Muwanga, the Kalangala district HIV focal person, says he heard of reports of coerced screen in some health facilities a year ago, but that he does not hear such complaints anymore.

Dr Edward Muwanga, the Kalangala district HIV focal person

Muwanga says that in Kalangala, health workers seek consent first from the beneficiary and also give them time before carrying out screening on them. 

He underlines that no one should be denied drug refills on condition of "forced testing".

Remember Namusoke from Mukono?  While she was not happy that she was denied a full refill because of declining to undergo screening, she maintains that screening is not a bad idea at all.

What she condemns is the way it is being done, saying it is wrong. 

“People should be educated and encouraged to screen for cancer and other diseases such as tuberculosis and diabetes, but not forced or denied drug refills if not ready."

Namusoke says the poor attitude and conduct of workers in some health facilities needs to be changed or else it will continue to hurt efforts towards encouraging women to undergo early screening for cancer.

 WHAT THEY SAY 💬 

Dr Cordelia Katureebe, national coordinator for HIV care and treatment at the health ministry

❝ I regret learning about this unbecoming habit and we promise to investigate further. Kindly provide details of the facility/facilities where this may be happening. The guidance on screening and management for cervical cancer is clear on providing care after counselling, information giving and consent by the client.  

Prof. Vinand Natulya, medical researcher

❝ In the professional ethics, you are not allowed to force one to test. We are bound by an oath called the Hippocratic Oath, which is historically taken by physicians and requires a new physician to swear and to uphold specific ethical standards.

In this oath, we are not allowed to disclose the cancer status of our client to a third party and there is no law above the Hippocratic Oath. If you did that [coercing screening], you would be destroying professional ethics.

In fact, if a health worker does that, he or she is supposed to be taken off the list of practitioners by the medical council, which is supposed to ensure professional ethics. So, health workers doing that are totally wrong.

Dr Abdallah Nkoyooyo, public health specialist

❝ I have also heard compulsory cancer screening allegations in some facilities. The Ministry of Health sent a new directive that cervical cancer is not mandatory, it is optional. It is wrong if health workers are doing mandatory screening.

We give health workers instructions to give information, to counsel clients, to do health education talks on every ART clinic day, and to tell clients the benefits of doing cervical cancer screening, given their condition and vulnerability, so that they increase the uptake of screening for them to access care and treatment on time.

Women may have challenges or reasons which may deter them from accessing cancer screening on the clinic day. For instance, she may not have shaved or she may be in her periods.

The target is to screen all those who are eligible because cervical cancer is on the rise. If somebody does not screen early and yet has cancer, the disease progression is faster, meaning we shall have higher mortalities. So, screening them is better than leaving them to come when it is too late.

Today, we have many young health workers and yet some older women are among the age group who are eligible. They may not want to be screened by young women who are dominating our facilities. Older women don’t want young health workers to screen them, otherwise screening is for their own benefit because we don’t want progression of the disease. 

Dr Stephen Watiti, HIV activist

❝ Women living with HIV should not wait to be forced, they should look at the dangers of cancer diagnosed late. 

I voluntarily did prostate screening lately at some huge cost. PSA test for prostate cancer at sh49,900, CEA (carcinoembryonic antigen) test for colorectal/colon cancer at 69,900 and FOBT (fecal occult blood test) for gastrointestinal tract cancers at sh14,900.

I have shared my costs not to boast, but to show how seriously I take cancer. Cancer is wreaking havoc among people living with HIV who survived AIDS-related deaths. 

However, I am intrigued by those forcing others to test. I don’t have much money to give, but the little knowledge I have is what I can give. Knowledge is power. [In Hosea 4:6] God says: “My people are destroyed from lack of knowledge". As we chat here, one of us is dying from cancer which was not diagnosed because of the reasons you give, which unfortunately are not going away soon. 

Immaculate Owomugisha, lawyer at UGANET

❝ We are not saying that people should not be tested, but rather let them be tested with full knowledge of the examination they are going to go through. 

People should not be denied a refill just because they are not ready for screening at that particular time. The information given is as to why it is important to go for cancer screening but the procedure thereafter is not explained at all. 

Why deny a refill just because a person is not ready? We also need to note that this “small” education may be happening in private facilities only.

Flavia Kyomukama, executive director of Action Group for Health Human Rights and HIV & AIDS (AGHA) Uganda

❝ No one rubbishes testing early, but [it is] the failure of processes to indicate to clients the benefits of early testing so they give informed consent rather than coercion. An unplanned cancer screening day for the client would make women defer acceptance. For example, if they have not shaved, what underwear they have on, etc.

I personally didn’t do screening for 20 years because I found young nurses and at times young male nurses, making me stop in the queue several times. Knowledge is very limited before and after the screening. There is much noise after a person tests positive for cancer.

Apart from delayed screening, many hurdles exist around the corner: nutrition, prayer healing, witchcraft healing and deliverance. 

Coercion won’t solve the issue and failure won’t stop them. How do we up our social behaviour to enhance acceptability of available health services?

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