Patient Advocacy Emerges as Critical Front in the Fight Against Antimicrobial Resistance
核心洞察
Dr. Kristin Molven, a Norwegian physician, developed sepsis (搜索) during aggressive lymphoma (搜索) treatment and credits effective antibiotics (搜索) with saving her life, underscoring AMR's threat to cancer care.
Ms. Busisiwe Beko, diagnosed with multidrug-resistant tuberculosis (搜索) in 2006 while pregnant and living with HIV (搜索), describes how stigma and isolation undermined treatment and self-esteem.
Both advocates argue that patient voices and family-centered counseling are essential to bridging the gap between clinical care, policy, and the realities of those most affected by AMR.
Two patient advocates—one a physician who survived sepsis (搜索) during cancer treatment, the other a survivor of multidrug-resistant tuberculosis (搜索)—are calling for patient voices to be placed at the center of the global response to antimicrobial resistance (AMR). Their accounts, gathered by AMR Alliance Japan (搜索) (Secretariat: Health and Global Policy Institute (搜索), HGPI) as part of an ongoing effort to collect lived experiences related to AMR, illustrate how the threat of resistant infections is already reshaping life-saving care in oncology, transplantation, and infectious disease settings.
A Physician's Sepsis During Lymphoma Treatment
Dr. Kristin Molven, a physician at Oslo University Hospital, was diagnosed with an aggressive form of lymphoma (搜索) in November 2021. Although her treatment initially went well and her doctors told her the cancer was "cured," she soon began losing strength in her lower body and became paralyzed from the waist down. Further examination revealed that the cancer had spread into her spinal cord; she was told that when lymphoma affects the central nervous system, life expectancy without treatment is around six weeks.
Her treatment plan included four courses of chemotherapy followed by an intensive fifth course prior to transplanting new stem cells into her bone marrow. With each round, her immune system was wiped out, leaving virtually no white blood cells. "My body was defenseless, and even a mild infection such as a common cold could pose a life-threatening risk," she explained. It was during this period that she developed sepsis (搜索), a serious bloodstream infection. "What ultimately saved me was the fact that effective antibiotics (搜索) were available," she said. "Without antibiotics, I would not have survived that course of treatment."
Dr. Molven emphasized that survival depends not only on the skills of healthcare professionals but also on whether patients can access antibiotics (搜索) as a life-saving resource. She noted that antibiotic resistance remains relatively contained in Norway, and that the government has launched a 35-point action plan to curb the spread of resistant bacteria. "Without prudent use of antibiotics and international cooperation, we will not be able to preserve this 'life-saving resource' for the future," she said.
AMR as the "Climate Crisis of Health Systems"
Dr. Molven described antimicrobial resistance as "the climate crisis of health systems," warning that if resistant bacteria become more widespread, healthcare could be pushed back by decades and many medical advances could be undone. "Advanced treatments such as cancer chemotherapy and transplantation are built on the assumption that antibiotics (搜索) will work when needed," she said. "Even if we succeed in controlling the cancer itself, the benefits of treatment can be lost if we cannot ultimately control infections."
She stressed the global nature of the problem, noting that "people, goods, and microorganisms cross borders with ease" and that "any use of antibiotics (搜索), wherever it occurs, can contribute to resistance in the future."
Stigma and Isolation in Drug-Resistant Tuberculosis
Ms. Busisiwe Beko, a patient advocate from South Africa, was diagnosed with multidrug-resistant tuberculosis (搜索) (MDR-TB) in 2006, after a course of drug-sensitive treatment failed to clear the infection. At the time, she was pregnant and living with HIV (搜索), and she described a period when "almost nothing existed to support people in her situation."
"I was diagnosed with drug-resistant TB in 2006... There was still this taboo and stigma around drug-resistant TB, and there was no support at all. Counseling was not available too, and no patient organization existed. I did not even know what drug-resistant TB was," she recalled.
National policy in South Africa at the time required anyone diagnosed with drug-resistant TB to be admitted to a hospital, often far from home. Beds were scarce, and patients sometimes waited without treatment. When patients left those hospitals before finishing treatment, their cases were reported on national television with appeals to the public to send them back to a clinic or police station. "It made you look like a criminal. That made people hide themselves," she said.
The stigma was compounded by self-stigmatization. "I was pregnant, I was HIV (搜索) positive, and I had drug-resistant TB. It felt like I was not clean enough, that I would spread the disease. My self-esteem was gone," she said. She described how the physical layout of clinics reinforced isolation: the TB room was separated from other areas, and she had to wear a mask while others did not.
Family and Community-Centered Counseling
Ms. Beko argued that the first priority is to fight stigma, including among healthcare workers who may believe that people with drug-resistant TB are more infectious or must have stopped their treatment. "Just because a patient has a disease does not mean they are a disease. Healthcare workers must sit and listen," she said.
She emphasized that support must extend to families, because stigma sometimes stops patients from disclosing their diagnosis, and families often have questions they cannot answer. "When the family is included in counseling sessions, they understand better why they need to be screened and get preventive treatment," she explained. The same challenge arises in contact screening, where close contacts may refuse preventive treatment because they are not yet sick.
Bridging Advocacy and Delivery
Both advocates underscored the role of peer support and patient-driven advocacy. Ms. Beko noted that people who have completed treatment "become the proof that it can be done for patients who lost hope long ago of ever being cured," and argued that patients "are the ones who should be driving advocacy."
Dr. Molven, who joined an Adolescents and Young Adults (AYA) cancer patient organization and has worked with the Norwegian Cancer Society since 2023, spoke at the Norwegian Parliament in December 2023 about the emotional realities of cancer treatment and the importance of antibiotic policy in cancer care. "Cancer and AMR can sound abstract and difficult, but when we talk about them through concrete personal stories, they are much easier to understand as 'issues that affect me and my family,'" she said.
Both advocates identified a persistent gap between advocacy and implementation. Ms. Beko stated, "We do the advocacy, but at the same time, someone must make sure the medication is actually available and accessible." Dr. Molven similarly called for "cross-cutting patient advocacy" that addresses system-level issues such as access, communication, and support, while acknowledging that sharing lived experiences requires a careful balance to protect personal and family privacy.
The accounts underscore a shared message: antimicrobial resistance is not a distant problem limited to a small group of patients, but a real risk in cancer care, surgery, and intensive care. As Dr. Molven concluded, "Antibiotics (搜索) are a limited resource that underpins people's lives, and patient stories play an important role in communicating this reality."