Over the last 25 years, things have changed dramatically for people living with HIV across the globe. Improvements in treatment, prevention, and access to medical care have saved and lengthened lives. And each year for the past five years, the number of global AIDS-related deaths has dropped.

But change hasn’t arrived everywhere equally. In 2017, there were fewer than a million AIDS-related deaths worldwide — but more than half of those deaths occurred in countries in sub-Saharan Africa.

Although UNAIDS has set goals to achieve treatment for all — and an end to the AIDS epidemic — there are still many places where people living with HIV can’t access the medical care they need.

That’s one of the many reasons advocates living with HIV and their allies around the world are fighting stigma, building resources, creating support networks, and working toward lasting change.

Over time, the achievements of advocates can appear like a sea of progress — but it’s the individual stories occurring one by one, like waves, that lead to the change we see in the world. The journey isn’t straightforward. There are hardships and setbacks along the way.

Here, Healthline and (RED) celebrate two women who have devoted themselves to HIV advocacy work: Lucy Wanjiku Njenga in Kenya and Kamaria Laffrey in the United States. Though they’ve lived through different experiences and challenges, both have channeled their personal stories into a way to help others — in their local communities and around the world.

Lucy Wanjiku Njenga: Empowering girls and women in Kenya

Lucy Wanjiku Njenga

Lucy Wanjiku Njenga is the founder and a team leader at Positive Young Women Voices (PYWV), a community-based organization in Dandora, Kenya. The original idea behind the organization was to address the major challenges faced by girls and young women living with or at risk of HIV in the community. Today, PYWV aims to empower girls and young women by offering mentorship, providing linkages and referrals to services, creating awareness, and offering information about sexual health and HIV.

Lucy has spoken about HIV all over the globe in Namibia, Ghana, South Africa, Belgium, and the United States. She also spoke this year at the AIDS 2018 conference in Amsterdam, Netherlands.

Diagnosis and the search for support

When Lucy was diagnosed with HIV in 2012, she says she had no clear place to turn.

“I did not know who to tell or ask for support,” Lucy told Healthline. She was scared. Her seven-month-old son was also very sick, and died two weeks after her diagnosis.

“We never even got to test him,” Lucy explained. The first time she disclosed her HIV status was to her son’s father, her boyfriend at the time. She had hoped that they would go together to have their son tested, but it didn’t happen. “He never showed up on the day planned,” she said.

Despite these heartbreaking experiences, Lucy didn’t give up. She knew that she could make a difference to others.

“Later on, I disclosed [my HIV status] for the second time to the public and decided to use my story for change,” Lucy said. “With this I gathered my support system as I kept going.”

The challenges of starting treatment

“It took like nine months before I went to seek treatment,” Lucy said. “I went back to my boyfriend who was abusive and kept promising we would go get treatment and finally have him tested.” But each time they planned to have him tested, he never showed up.

“It is only after ending this relationship I took charge of my health and was put on treatment,” she shared.

But her treatment options were limited. “It was during the days of CD4 count monitoring,” she said, referring to a test that assesses how well the immune system is functioning. At that point, she was only offered Septrin (co-trimoxazole), a type of antibiotic, to reduce the risk of infections.

In time, Lucy met someone new and fell in love. She described the man who became her husband as “the most beautiful, loving, and kind man I know.” When Lucy became pregnant, she started antiretroviral therapy, the most effective HIV treatment available. Her daughter, now three years old, is HIV-negative.

Her role as an HIV advocate

“Since I took HIV advocacy as my life’s purpose, I tend to be involved in matters related to HIV and how it affects the lives of people living with HIV on a daily basis,” Lucy told Healthline.

“I could be in a meeting reviewing a policy, a guideline, or looking at a framework,” she said, while at the same time, she might be “counseling someone newly diagnosed on social media.”

As an advocate, Lucy takes on projects both local and global. For example, she’s been involved with fundraising for menstrual pads for adolescent girls in Dandora, since having access to basic necessities reduces the chances that they’ll engage in risky behaviors due to poverty. Lucy also journeys to global forums around the world to speak for her community.

“It is my life’s purpose to ensure we are not left behind, not now, not ever,” she said.

Successes, challenges, and the road ahead

The hard work of advocates has brought some significant successes for the HIV community.

“Having 1.2 million people living with HIV on treatment in my country Kenya alone is a success,” Lucy said. She also noted the importance of the UequalsU movement, which represents the medical consensus that when a person has undetectable levels of HIV in their blood, they can’t transmit the virus. “Undetectable = Untransmittable messages being embraced is a plus.”

But there are still many challenges. One of the biggest, Lucy said, is when programs and policies are developed for people who live with HIV that don’t actively involve those in the HIV community in the decision-making and implementation process. Lucy said it’s as if those directly impacted are included as “an afterthought and not as partners.” Instead, the focus should be on greater, more meaningful involvement of people living with HIV throughout the entire process and on an ongoing basis.

Lucy also described the importance of communities in bringing about lasting change. “If we are to end the epidemic, we can’t pretend the communities are not key.”

When it comes to the top priorities for making a difference to people living with HIV, Lucy is clear.

“Alleviate poverty. End stigma,” she emphasized. It’s vital, she added, to ensure that people living with HIV “have access to the highest levels of health services.”

Kamaria Laffrey: Justice reform and community advocacy in the United States

Kamaria Laffrey is Florida community organizer for the SERO Project, a network that fights HIV stigma with a focus on undoing HIV criminalization laws. She is also founder of emPOWERed Legacies, an organization that addresses personal development beyond an individual’s HIV diagnosis. Services offered by emPOWERed Legacies include medical referrals, workshops, and program consulting.

Kamaria was also featured in the “Faces of HIV” mobile art exhibit as part of a Florida Department of Health HIV awareness campaign. In 2018, she was named one of Plus Magazine’s Most Amazing HIV+ People.

Diagnosis and the search for knowledge

Kamaria was diagnosed with HIV in 2003, shortly after giving birth to her daughter. She was scared and didn’t know where to get information or treatment. “At the time, I wasn’t connected to any services or resources,” she told Healthline.

When Kamaria first learned that she was pregnant, she was in college and had just been evicted.

“I didn’t know what to do,” she explained. After five months, she tried to access prenatal care, but the health department was booked past her due date. At the hospital, staff told her, “If a mom doesn’t have prenatal care, you get tested upon birth for everything.”

After her diagnosis, a health department worker visited to take the names of anyone Kamaria had sexual contact with, but she wasn’t given information about accessing health services. She remembered thinking, “I don’t know what I’m not supposed to do and what I am supposed to do.”

Over the next year, she got rides from family members to make the 1.5-hour trip to a children’s hospital in Tampa, Florida, so that her newborn could receive preventive treatment. “I remember the nurses were emotional when they came out to tell me that she was negative,” Kamaria recalled. “They were happy and hugging me.” But Kamaria said that at the time, she didn’t really understand what it meant.

It took time for things to change. A case manager from Florida’s Healthy Families program visited to check on Kamaria’s daughter and encouraged Kamaria to write a letter to the health department outlining gaps in HIV services. It was her first step into advocacy.

The challenges of treatment

Since Kamaria wasn’t connected to public or nonprofit services for people living with HIV, she ended up seeing an epidemiologist at a private clinic.

“He was from the early ’80s of the epidemic,” she said. “His care was very hard core and stigmatizing and terrifying.” She explained, “Every time I went to see him, it was, ‘Are you taking your pills? If you’re not, you’re going to die.’”

But Kamaria found the side effects of the medication debilitating. “The pills were making me sick and every time I told him that, he wasn’t willing to budge.”

She later learned that the treatment regimen she was prescribed wasn’t appropriate for her. “I was on the strongest medication you could be on at the time. They weren’t supposed to give me that,” she told Healthline. “The medication combination they gave me was for people who were diagnosed with AIDS.”

The medication made her feel so ill that in 2005, she stopped treatment. She didn’t try again until 2009, after she started getting migraines and swelling in her lymph nodes. Within weeks of starting treatment, the symptoms went away.

“Unfortunately I felt that I needed to see a physical difference to know that the medications were working to combat this fear I had that the medications were going to make me sick again,” she explained.

Her role as an advocate

Today, Kamaria’s advocacy work focuses on three main areas.

On the national level, she’s involved with advocacy around criminalization. “We’re trying to modernize outdated laws that were written in the ’80s,” she explained. “These laws are based on forcing people to disclose their status. But you’re not forced to disclose any other illness you have, just HIV and some STDs.”

She’s also involved in local matters in her area. “My personal advocacy where I live is focused on women living with HIV or at risk of HIV,” she said. Her work includes encouraging women to have bodily autonomy, and to enjoy their sexuality while protecting themselves. She also helps raise awareness about pre-exposure prophylaxis (PrEP) medication that can prevent HIV transmission.

Lastly, Kamaria is engaged in promoting “people-first language.” That means using language to help combat the stigma around HIV by replacing stigmatizing phrases with empowering ones.

“I’m not an HIV-infected woman. I’m a woman living with HIV,” she explained.

Successes, challenges, and the road ahead

On the national, and perhaps global scale, one major success stands out.

“The UequalsU movement is probably one of the most powerful, empowering successes for people living with HIV and HIV-negative people,” Kamaria said. “It’s removed people’s fear of intimacy.”

But, she has one caveat. “I don’t use it in my criminalization advocacy for strategic legislative reasons.” She doesn’t want to take the risk that lawmakers will create another tier to discriminate against those who can’t medically reach the point of having an undetectable viral load.

When it comes to challenges, Kamaria noted that access to medical services is still a big issue. Florida didn’t expand Medicaid, which would have increased access. Moreover, transportation is a significant barrier since Florida has many rural pockets. “People still won’t have the same access to actually get to the resources,” she added.

The takeaway

Wherever there are people in the world who don’t have access to the information, treatment, support, and care that they need, advocacy matters. It raises awareness, connects communities, and gives people hope. Lucy and Kamaria are two of the many HIV advocates around the world who are working hard to make a difference on local, national, and global levels. And with time, and their continued perseverance, change will happen.