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黑人妇女因乳腺癌而死的可能性比白人妇女高41%,但在治疗临床试验中的代表性却大大不足。Cavan图像/盖蒂图像
  • 在临床试验中,黑人妇女的人数大大不足。
  • Breast cancer survivor Ricki Fairley is working to bring awareness about clinical trials for breast cancer.
  • 一个新的运动,”When We Tri(al),旨在使黑人妇女能够参加临床试验。

Ricki Fairley wears pink shoes for the entire month of October, one of many things she does to help raise awareness during Breast Cancer Awareness Month.

但是,每天的每一天,她都孜孜不倦地鼓励黑人妇女参加乳腺癌的临床试验。

In 2011, after an annual mammogram, Fairley was diagnosed with stage 3A triple-negative breast cancer, an aggressive form of breast cancer that has a poorer outlook than other types. She was 55 years old.

“I did a double mastectomy, six rounds of standard of care, very aggressive chemo, 6 weeks of radiation, and a year to the day, my cancer came back. They found black spots on my chest wall. My doctor said I was metastatic and I needed to get my affairs in order,” Fairley told Healthline.

她立即​​称为三重阴性乳腺癌基金会,该基金会向她推荐了亚特兰大的一位专家,当时她住在那里。

“[She] put me on experimental drugs at the time, which are now standard of care for triple-negative, and it’s been 10 years,” Fairley said.

While going through treatment, she learned that Black women have a 三倍增加风险 三阴性乳腺癌。

Although social detriments of health are often pointed to as the reason for health disparities,梅利莎·戴维斯(Melissa Davis)威尔·康奈尔医学(Weill Cornell Medicine)国际乳腺癌亚型研究中心科学总监,科学家们说,科学家正在发现与遗传血统,特别是西非血统的关联,与三阴性乳腺癌相关(TNBC) risk.

“Specific alleles that are African specific are also showing significant ancestry-associated TNBC risk (REF). This would also be seen in Latinx communities as several groups (when disaggregated) have a significant amount of African lineage,” Davis told Healthline.

However, she added that emerging data from large population studies, with better inclusion of diverse Latinx and African populations and that investigate ancestry, are needed to validate these theories.

Fairley agrees that more studies uncovering why Black women get breast cancer are needed.

但是,得知黑人妇女是41%more likely to die from breast cancer than white women made her think there must be a connection with treatment or lack of it.

Fairley started digging into clinical trials and discovered that Black women are drastically underrepresented in clinical trials.

Only 3% 她发现,在2008年至2018年之间,临床试验的参与者在2008年至2018年之间获得了癌症药物的批准。

“每个人都想将其归咎于健康的社会决定因素 - 您没有良好的护理机会,您去社区医院,没有钱购买毒品,您是可怜的黑人妇女。但是我说,不仅仅是这些。”她说。

这个观念和实验药物挽救了她的生命这一事实激发了费尔利,专注于使更多的黑人妇女参与临床试验。

“I feel like I’m still alive to advocate,” she said.

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我希望黑人妇女知道她们面临的影响。我希望他们自己提倡。”里奇·费尔利(Ricki Fairley)说。如上图所示。

In 2020, Fairley founded the organizationTouch, The Black Breast Cancer Alliance, which aims to eradicate breast cancer in Black people.

今年,Fairley与Breastcancer.org合作推出When We Tri(al), a movement dedicated to empowering and educating Black women on the importance of clinical trial participation.

“当您重新挖掘历史并查看乳腺癌护理标准的药物时,没有黑人妇女在试验中,或者在某些研究中有黑人妇女,她们死了,所以我们从来没有考虑过research, and the only way we’re going to change those numbers is to get drugs that work with our bodies,” said Fairley.

Oluwadamilola博士“ Lola” Fayanju, chief of breast surgery at Penn Center for Cancer Care Innovation, said Black women’s participation in clinical trials ensures a wide range of potential barriers — including mode of delivery, side effects, the timing of administration, and treatment adherence and tolerance — are addressed during the trial period before becoming publicly available.

However, she said one of the main barriers to getting Black women to participate in clinical trials is that their doctors don’t ask them.

“[And] when they are, they may not be asked in ways that reflect their concerns about bias, choice, and the temporal and financial costs associated with participating,” Fayanju told Healthline. “The recruitment and consent processes need to be tailored to address the needs and priorities of Black women.”

Additionally, Fairley found that misinformation from some breast cancer survivors, or Black “breasties,” as she calls them, is another reason Black women aren’t participating in trials.

她根据她的组织进行的焦点小组发现了这一点,其中包括48次定性访谈和对200名黑人妇女的定量研究。

“我们听到breasties给错了信息,like ‘You don’t want the sugar pill because you’ll die.’ The truth is there are no sugar pills in cancer trials. You either get a standard-of-care medication or the new one,” Fairley said.

Additionally, justifiable mistrust of clinical trials exists due to studies like theTuskegee Study观察治疗梅毒的黑色populations without participants knowing this was the case. Participants were told they were receiving treatment for “bad blood,” yet they received no treatment at all.

当我们Tri(AL)旨在教育黑人妇女今天的临床试验基础知识,并赋予她们参与的能力。消息传递包括:

  • The stuff that happened 50 years ago can’t happen now — there are laws in place to protect you.
  • This is a viable and potentially lifesaving option for you.
  • That Advil you took last week was in a clinical trial, and the Tylenol you gave your baby was in a clinical trial.
  • 当您参加临床试验时,您会取得更好的结果,因为您可以从医生那里获得更多监督,更多的扫描,更多的治疗和更多的血液检查。
  • Because we don’t have data on the current drugs for Black women, any time a Black woman gets chemo treatment, she’s doing a clinical trial on her own body.
  • 临床试验是免费的。
  • Do it for your daughter and granddaughter.

当我们Tri(Al)也在围绕这个想法上推出信息时,“没有黑人妇女,世界会是什么样?”

“I don’t want to scare people, but I want Black women to know what they are up against. I want them to advocate for themselves,” Fairley said.

她的目标是通过传播对乳腺癌的认识来做到这一点。

“There is data that says most Black women don’t know when they should get a mammogram, so I want Black women to stand in front of the mirror and look at their breasts every day and talk about it with their daughters… Talk about who had cancer in the family. And then say, ‘Clinical trials can save your life, and we’ll keep dying if we don’t [participate],’” said Fairley.

她希望黑人家庭在需要一个临床试验之前谈论临床试验。

“Black families need to be talking about this in their households at the kitchen table, so if [they] do need one, they know where to go, what it means, and the fundamentals of trials,” Fairley said.

如果您正在寻找三阴性乳腺癌或转移性乳腺癌的临床试验,Fairley建议参观Ciitizen网站

对于对乳腺癌临床试验感兴趣的人,请访问BreastCancerTrials.org