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Eva Schumacher-Wulf and Mamma Mia!, the magazines for breast cancer patients issued by Eva

An Honest Patient Voice is a Powerful Catalyst for Change and Better Outcomes

“Whenever you talk about patients, you should actually talk to patients because we have something important to say. Sit and talk with me because this is about my life.”

In a lecture entitled “A Patient’s Real World Experience – Bringing the Patient’s Voice to Daiichi Sankyo,” Eva Schumacher-Wulf, who is a professional journalist and longtime breast cancer patient and advocate, emphasized the vital importance of shared decision-making in the effective treatment of early breast cancer and advanced or metastatic breast cancer (mBC) that has recurred in other organs.

“The first step is patient education,” explains Eva. “It is not easy for patients to demand things when they are in a fragile situation following a diagnosis, but if they don’t demand to be a part of the shared decision-making process, the medical community will probably not change.” Shared decision-making is not only important for patients and caregivers, but also for progressing the development and regulation of cancer treatment.

“Considering honest patient voices alongside data and statistics is very useful for creating more innovative medicines and optimizing clinical trials. It is also good for patients to access information regarding possible treatment options, adverse events, and available supportive care because informed patients feel more in control, which can positively impact the efficacy of patients’ treatment, their quality of life, and their hope for the future.”

Eva’s cancer journey

In many ways, Eva herself represents a beacon of hope for patients in her home country of Germany, and globally. She was diagnosed with breast cancer in 2004 at age 34 when her children were only 1 and 4 years old and she was working in a career in international communications and tourism that she loved.

“I was so young. I had to make decisions but there was not much data and pre-menopausal women were largely excluded from clinical trials,” Eva explains. “I needed better communication to understand how a particular therapy would benefit me or improve my outcome at my stage of life, but all I could find was a few out-of-date scientific papers.”

Eva’s tumor regressed after undergoing therapy. While she knew her particular tumor carried a high risk of recurrence, she was completely unprepared when told in 2018 that secondary tumors had been found in her bones (bone metastasis) and subsequently in other parts of her body, including the lungs and brain. The subsequent discovery of more tumors further narrowed the number of potential treatments. Despite all she has been through, Eva considers herself lucky to have had access to oncologists who are able to stay abreast of rapid developments and genuinely heed patients’ experiences. Disturbed by the number of women dying of breast cancer globally due to unequal access to information and supportive care, Eva has drawn upon her communication skills and patient experience over the past 19 years to advocate patient needs by engaging with stakeholders.

“Pharmaceutical companies are the ones developing the drugs that may change our lives, so we need to talk openly with each other,” says Eva. “If I can change some perceptions and we all make incremental changes, that can generate significant improvements.”

In 2006, Eva further drew upon her journalistic skills to launch the Mamma Mia! Breast Cancer Magazine that offered quality scientific information about cancer in readily understandable language and in a bright, colorful layout. “Many people were shocked at the design, but post-diagnosis life is dark enough, and I didn’t feel there should be rules about the layout of serious content.” The magazine proved a success, creating a far-reaching patient-centric network that enabled its publishers to extend their global patient-centric advocacy.

Patient-centric treatments: Potential areas for improvement

In the early breast cancer stage, Eva urges honest communication of recurrence risk once a patient is declared cancer free. She also asks researchers to find new biomarkers to evaluate the efficacy of successful metastatic cancer drugs in early-stage cancer treatment and which patients are most at risk of recurrence. “No cured patient needs to experience long-term side effects or delayed adverse events from a therapy they didn’t really need.”

As the development of successful cancer treatment advances, Eva is asking for more research into ascertaining the smallest effective dose and tailoring maintenance doses for longtime positive responders, urging regulators and pharmaceutical companies to improve early access to innovation. Honesty is the best policy in the community, and in the industry. Improving outcomes for cancer patients is not only about improving access to treatments, but also about improving awareness in the community. Eva believes social acceptance is rising as more individual stories are published by good journalists and experts on social media. 

“The situation is different in individual countries. Local patient groups should always be involved because only they know the culture of their country. They need support in gathering data to enable them to approach local politicians and broader society.”

Whether engaging with the medical community, politicians, local communities, or family members, there is no doubt that patients have a right to a seat at the table in discussions about their lives, and embracing patient-centric principles is improving the development of innovative drugs and the efficacy of treatments. However, for Eva, maximizing outcomes requires one more vital element.

“Whatever the setting and wherever you are in the world, patients have the power to inspire change, but only if we are completely honest and open with each other. Sometimes people don’t like to hear what you have to say, so it takes courage, but honesty is vital for encouraging a patient-centric mindset and progressing patient options.”

Options breed hope!

Daiichi Sankyo has made it part of its mission to promote patient-oriented drug discovery and development through early access programs, transparent collaboration with patient groups, and supporting patient advocacy activities.

“I am so impressed by the quiet determination of engaged researchers to move things forward and make a contribution. When I got to see my youngest child graduate from school, I danced into the night. I encourage you to have a party each time you discover a new target because it may change the lives of millions of people. Keep listening to patients and creating new options because those options really have been awaited by the people.” (Eva Schumacher-Wulf).

Eva Schumacher-Wulf Profile

Pre-diagnosis: Spokesperson for Israeli Government Tourist Office in Germany
2004: Diagnosed with breast cancer
2006: Founded Mamma Mia! Breast Cancer Magazine
2015: Founded Mamma Mia! Ovarian Cancer Magazine
2017-: Board Member, World Ovarian Cancer Coalition
2022-: Board Member, ABC Global Alliance

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