Blood cancer does not wait, so neither can we: Katharina Harf, Global ambassador, DKMS

She is not a doctor by profession, yet she is saving lives

Katharina Harf-DKMS Global Ambassador

Katharina Harf is DKMS Global ambassador and Vice Chairwoman of DKMS Foundation Board whose motto is ‘Delete Blood Cancer.’ DKMS which in German stands for ‘Deutsche KnochenMarkSpenderdatei’ or ‘German Bone Marrow Donor File’ is an international non-profit organisation which aids cancer patients in finding their matching donors and giving them a second chance at life. Currently, the foundation operates in India, Germany, USA, Poland, UK, Chile, and South Africa.

She tells us that her entrepreneurial journey started due to a personal experience, which changed her life. After losing her mother to blood cancer as a child, Katharina Harf, and her father Dr Peter Harf were determined to grow the bone marrow registry and that is how DKMS was founded in the year 1991.

It was her mother’s battle with the disease, that propelled Katharina to embark on a mission to make people aware about the importance of stem cell donation and to ensure that other families were saved from the very same painful experience of loss that her family had suffered. Today, her non-profit organisation DKMS is based in Tübingen, Germany, has entities in the US, UK, Chile, Poland, and India and is committed to giving people another chance at life.

In an exclusive conversation with SME Futures, Katharina talks about the disease, her early entrepreneurial days, lessons learnt and her plans for India.

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Edited Excerpts:

Tell us about DKMS. What led you to start a global stem-cell registry?

The DKMS story began when my mother Mechtild Harf was told that the only treatment for her leukaemia was a blood stem cell transplant. With no matching family members to act as donors, her best chance of survival was to find an unrelated donor.

At that time, there were only 3,000 potential stem cell donors on the German registry who could provide a transplant. Confronted by the fact that my mother faced difficult odds in finding a matching donor, my father Dr. Peter Harf decided to apply his prolific business skills to the question of how to give his wife and patients like her the best chance of survival.

The answer seemed clear: more unrelated donors meant better chances for all patients in need.

My father founded DKMS on the 28th of May 1991 and in our first year of operation we managed to expand the German registry from 3,000 donors to 68,000. Despite my family’s best efforts, my mother ultimately did not survive. However, before she passed away, she made my father promise her that he would not stop fighting until every patient had a matching donor and a potential second chance at life.

Since then, my father and I have kept that promise. By 1995, DKMS had already become the world’s largest stem cell donor registry and ever since that we have worked tirelessly to fulfil our mission – to provide as many blood cancer patients as possible with a second chance at life.

How as Vice Chairwoman of the Board are you bringing change and creating hope for patients and their families?

In my role as Vice Chairwoman, I continue to do what I have done during my entire life at DKMS: raise awareness around blood cancers and blood disorders, the impact of stem cell transplants, and encourage the registration of potential stem cell donors to save patients’ lives.

With this platform now, I am able to help the organisation expand to new countries, working with local leaders to help bring hope to patients from underrepresented populations. As someone who has not only personally been affected by this cause, but who has endeavoured throughout her life to change the fortunes of families who have suffered like mine, I also hope to bring a personal touch to our mission. We not only have the science and business acumen to solve the issues we face, but our passion to do so is born from the fact that we know what it is like to hear a diagnosis that turns your world upside down. I speak both for DKMS and the work we do, as well as the patients we serve and the hopes that they rely on.

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During this journey, what have been your biggest challenges or failures and what have been the lessons learned from them?

When we opened the US branch of DKMS – our first international entity, we were truly starting from scratch and every aspect was a challenge waiting to be faced!

We worked out of a small office space that was loaned to us, with every employee ultimately having to work every job at some point. Despite the difficulties we faced, both in building a successful, efficient organisation and in spreading our message to one of the largest and most diverse markets in the world, we were always driven by the belief that no challenge could not be overcome.

We fell from time to time, such as when our first major registration event did not pan out as we had hoped, but we always picked ourselves up and kept moving forward, taking what lessons we could from any failure or mistake we made. This willingness to try new ideas and think outside of the box helped build DKMS into not just a powerhouse in the industry, but a hyper-flexible organisation that could think on its feet and constantly innovate.

One of the biggest things I learned as a manager in our early days and that I have ensured remains true at DKMS is in how we hire our staff. It is not enough to simply be the smartest, most qualified candidate on paper. Our employees need a heart that matches their minds, and intelligence that is rivalled only by their passion for our mission and a willingness to make our cause their own. With these qualities I know that our staff is willing to think big and take risks, because they know that being open to failure and learning from it is the only way to achieve the seemingly impossible.

People often have little awareness of this disease. How is a stem-cell transplant the most effective treatment option for a patient suffering from blood cancer or a blood disorder such as thalassemia?

Both malignant and non-malignant conditions can be treated with a blood stem cell transplant, including Lymphoma, Leukaemia, Myeloma and Hodgkin’s disease and other blood disorders such as Aplastic Anaemia and Thalassemia.

Sometimes in fact, the only treatment option for the survival of a blood cancer patient is with a blood stem-cell transplant. A successful blood stem-cell transplant in 70 to 90 per cent of these patients may give them a second chance at life, depending on the disease’s condition and the donor type.

For a blood stem cell transplant to succeed, it is important that the HLA (Human Leukocyte Antigen) of the donor and patient are as close to identical as possible in order to avoid rejection reactions between graft and patient. Tissue types are passed from parents to children. Only about 30 per cent of the patients in need of a stem cell transplant as a life-saving treatment, are able to find a sibling match. The rest 70 per cent depend on finding a matching unrelated donor.

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Could you tell us about the importance of the need for a worldwide stem cell registry with a focus on India?

At DKMS, we are driven by a simple ethos: to best serve our patients, we cannot simply address the problem at hand, but must look to where needs are not being met. It is with this mindset that we have approached our international expansion, including the establishment of DKMS-BMST in India.

Fighting blood cancer on a global level, we recognise that the unique genetic information that exists within different regions and countries means that our current donor database has to address the needs of patients in these areas. Therefore, DKMS continues to expand, opening offices in new countries so that we can recruit donors with the HLA typings specific to those areas. Through this approach, we can help the patients in these countries as well as worldwide who currently face steep odds in finding the matching donors they need to survive, due to their heritage.

Facing the realities of genetic diversity and the subsequent role it plays in blood cancer and blood disorder treatments, our global activities ensure the greatest chance of success for patients whose lives rely on donors with similar HLA typing.

In India over 100,000 people per year are diagnosed with a form of blood cancer and this number does not take into consideration the vast numbers of patients suffering from other blood diseases and disorders, including Thalassemia which is a particular problem in this country. Unfortunately, Indian donors are currently severely underrepresented in the global pool of potential stem cell donors, meaning Indian patients face much steeper odds in finding their lifesaving matches. Our efforts in India, aimed at raising awareness and increasing participation in the donor registry, will improve chances for patients within the country, as well as those who share similar genetic characteristics and ethnic backgrounds around the world. Concomitant to this approach we have crossed borders and left no stone unturned, fighting for our patients wherever they might be and doing whatever it takes to save their lives.

DKMS has partnerships in India so please update us on your roadmap for the future and the work being done to that end.

Every year, about 70,000 donor searches are initiated across the globe. Unfortunately, due to the lack of a matching donor, India has one of the highest ratios of searches that do not result in transplantation. At DKMS, we are working to find a donor for every patient in need and require your support in achieving the same here in India.

Through our venture with BMST (Bangalore Medical Services Trust), we have taken great strides in addressing the needs of Indian patients by holding over 1000 registration events since our inception and adding over 40,000 new potential donors to the registry. Still, our work is nowhere near done and we aim to expand our registration efforts to many more regions throughout the country to further help diversify the registry and ensure that all patients in need have a chance at finding their matching donors.

What does the International Women’s Day slogan, #ChooseToChallenge mean for you in your work life?

For me, #choosetochallenge is the underlying approach I employ every day. When we began DKMS no one believed a private donor centre organization could be successful and we proved that wrong. When we began to expand internationally, many thought the complications of a cross-cultural approach would cause too many issues, yet here we stand today with over 10.5 million donors in seven different countries.

Many times, throughout my work at DKMS I have heard the phrase “it’s never been done before,” but to me there is only one response to that: “it hasn’t been done…yet.” Today, we are focusing on one of the biggest challenges we face in trying to ensure a matching donor for all patients in need, which is diversifying the registry.

We know that the odds of getting a second chance at life and a cure for their ailment are not equal for all patients and those from communities of colour often have a lesser likelihood of finding the matching donor that they need. Yet, like all the challenges that we have faced over the last three decades, we refuse to believe that this too cannot be changed. By expanding our operations internationally and investing in raising awareness amongst underrepresented populations we will rise to the occasion on behalf of those in need and ensure that all patients, regardless of where they live, have an equal chance at a second chance.

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Are there any assumptions about women that you would like to change? Why?

I live my life and approach my work with the firmly held belief that the less we assume about others the better we are able to honestly assess them. One of the bigger issues facing women in society is not just what is assumed about them, but the belief that any assumption, especially one based on something like gender, is helpful. I am many things – a woman, a mother, a business leader – and yet none of these can truly define me. I am defined by the work I do and the actions I take and that is how we should view everyone, regardless of gender, race, or any other characteristics that are simply a part of an individual’s whole identity. The moment we stop trying to figure out who a person might be is the moment we are truly able to listen to them and learn who they really are.

What is it that most people do not know about you?

That every story still affects me, and every project feels like it is for the first time. I began my work at DKMS on the ground floor, helping to build the US offices from scratch and participating in every donor drive we held and meeting every patient we worked with. This close connection to the cause is what drove me then and what still drives me now.

I may have been doing this for many years, yet when I meet with patients and listen to their stories and the fears they have, I find myself feeling the same things I felt thirty years ago; the pain and sorrow for the suffering families and the hope and optimism of knowing that we can do something about it. No matter where my work has taken me in the world or what positions I have held, I have always believed that a hands-on approach is key to both being successful and reminding yourself why you do what you do. Every patient I meet, every smile or tear I share with them is a constant reminder of why failure is not an option.

What are your priorities this year?

As we enter the second year of this global pandemic our priorities remain unchanged, despite the massive shifts to the landscape we face: to continue to expand the registry and provide more patients with a second chance at life. Amidst the chaos of the past year, we have unfortunately seen adverse effects on the healthcare of the many patients that we serve, as everything took a backseat to control the spread of the coronavirus, but we cannot simply be content to wait until this passes to address our patients’ needs. We will work locally and internationally to ensure that our patients have access to the care they need, and we will continue to be proactive in addressing the issues they face. Blood cancer does not wait, so neither can we.

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