Not in the least because of what I went through with my own family, I developed a great interest in medical issues. When our youngest son, Andreas, was seven years old, he was diagnosed during a routine medical checkup with uveitis, an inflammation of the middle layer of the eye. The disease progresses in surges and can cause chronic vision impairment. In the worst cases, it can lead to the detachment of the retina and result in blindness. At the time, uveitis was considered incurable. During the disease’s acute phase, our son endured torturous headaches and extremely painful eyestrain; he could not see and of course couldn’t play or horse around. For weeks at a time, he wasn’t allowed to go to school.
As a mother, it broke my heart to see Andreas suffer so, and our family lived in fear of him losing his sight. We were in constant contact with specialists, but his doctor, Professor Boeke from the eye clinic in Kiel, gave us little hope. He and his colleagues did not know of any cure.
In those days, cortisone was used to lessen the impact of the illness, though it did not combat it directly. Our search for alternative medicines proved futile as well. I was desperate. Was our son going to go blind?
In 1980 we took a family vacation on the Seychelles Islands. Here we noticed that another ailment that Andreas had, a pronounced case of eczema, got visibly better even without cortisone treatment. Within a few days, the affected areas were completely healed. Back in Germany, Andreas’s attending eye doctor noticed great improvement in his eyes as well, and my son was able to regain his full focal strength.
What had happened? The climate specific to the Seychelles, the warmth, the intense light, the sea air—something must have had a great impact on our son’s condition. When I spoke with Andreas’s doctors, I became charged. Suddenly there was hope that others affected with this illness could be helped as well, with climate or light therapy. This prospect inspired me enormously. At the time, approximately 200,000 people in the Federal Republic of Germany suffered from uveitis; the cost of treatment was in the millions. In 1981, following my initiative, the Bertelsmann Foundation established the Uveitis Project.37 Under its auspices, in 1981, 1985, and 1986 two groups of uveitis patients traveled under medical supervision to the Dead Sea in Israel. The pilot project demonstrated that exposure to the particular light of the region led to a decrease in symptoms and at times even to a cure.
In 1984, we founded the German Uveitis Study Group in Gütersloh, which was made up mostly of ophthalmologists from different university hospitals. The group’s goal was to expand research, information, and education around the diagnosis and treatment of uveitis. We formed the first uveitis self-help group in Germany in the summer of 1986 in Gütersloh. At the time this was a new type of program, and the group has since served as an example for many other self-help groups. Almost exactly four years later I became president of the German Uveitis Association, founded in July 1990. In the years that followed, the association started a number of research projects that promoted the development of outpatient light therapy, including one at the University of Münster. The uveitis project was the first health care initiative of the Bertelsmann Foundation.38
This first success, which grew directly out of my personal observations and my intuitive sense, encouraged me to continue along this somewhat unconventional way of gathering expert knowledge. The uveitis project taught me to draw on international specialists and to seek out unusual partners—whatever it took to support a project.
The whole time that I was working on the uveitis project, I was also very involved in the field of neurological illness.39 Once again, I was motivated by personal experience. When one of my sons was fourteen years old, he began to show signs of motor skill difficulties. Eventually the left side of his body became paralyzed. We were frozen with fear. Would our son become an invalid? Six weeks later he could walk again, but no neurologist had an explanation for what had happened.
At this time I knew very little about seizures and strokes, and the disease was not part of public knowledge. Fortunately this was not our son’s diagnosis. Instead, his doctors suspected that he had contracted Lyme disease from a tick bite. But when the neurologists I met during my son’s illness asked for my support for a project to determine the early detection of a stroke or seizure, the powerlessness we felt then made me eager to help.
In August 1983 I met with the neurologist and psychiatrist Prof. Dr. Gerhard Sitzer and with the foundation’s executive director, Dr. Hans-Dieter Weger, to discuss the possibility of the Bertelsmann Foundation’s involvement in the field of neurology.40 In 1984 we supported a project by the Düsseldorf University Hospital; we funded a number of studies that analyzed the blood flow in the carotid artery. These studies would assist in properly assessing arteriosclerotic vascular disease and determine an individual’s risk for a stroke. The project, titled Neurology I, ran from 1984 until 1987. For a project called Neurology II, from 1985 until 1988, the Bertelsmann Foundation supported research at the Clinic for Neurology at the University of Münster, this time to discover the warning signs of an imminent stroke. The foundation granted financial assistance and supported the acquisition of the necessary technology. For a third foundation project, called Neurology III, the university clinics of Mannheim and Münster used blood samples to determine the causes of thrombosis, or a blood clot, which can trigger a stroke.
Looking back, the research projects may seem fairly straightforward. But at the time, I was not only very involved but emotionally invested. In the beginning, I was constantly seeking out leading health professionals to gather information on vascular disease and strokes. I wanted to know everything! Slowly I learned more and more about this treacherous and widespread illness, which is the third leading cause of death in Germany. According to official statistics of that time, each year 250,000 to 300,000 people suffered from a stroke. Every fifth person died, and only a quarter of those affected were ever able to go back to work. The real number must actually be much higher, since not every stroke is diagnosed as such.
The more time I spent dealing with cardiovascular disease, the more I realized how many taboos existed around it. Whenever I spoke to someone about it, they often became quite uncomfortable. Everyone thought it affected only older people. Indeed, it is a frightening thought to perhaps one day have a crooked smile, struggle to speak, or even be paralyzed. But it didn’t happen very often, did it? And anyway, it was a problem for old people, not a current medical phenomenon for younger people, right?
Actually, the opposite is true. When I began to visit hospitals and rehabilitation centers where stroke victims were being treated, I realized the extent of the challenges. Both the population and the doctors knew way too little about stroke’s cause. It’s not only older persons who are afflicted (and their number is growing); young people, children, even a fetus in the womb can have a stroke. In my engagement with the cause, I encountered desperate patients and families. They are unforgettable. Working for stroke victims had by then long been my passion, and I realized that apoplexy, or stroke, needed its own lobby. I spoke at length with my husband about it. While he understood the urgency of the situation, he let me know in no uncertain terms that any research program into the causes of an illness, coupled with an effective public campaign and outreach program, would put a long-term strain on the resources of the Bertelsmann Foundation. I had to take on the responsibility of expanding the initiative to other funding sources.
I thought long and hard about the best way to set up a trust for this type of endeavor. Would I really be able to generate public awareness for such a challenging issue? Finally, on November 17, 1992, the independent German Stroke Aid Foundation was established. On January 29, 1993, it was accredited by the minister of the interior of North Rhine–Westphalia.41
Now, after seventeen years of working with the Stroke Aid Foundation, I know that our long journey was worth it. The beginning was hard—I often had to get up between four and five in the morning to keep my many appointments with doctors, sponsors, and project partners. Without a doubt, the name Mohn and my connection to the house of Bertelsmann helped open doors. But it was up to the Stroke Aid Foundation to seal the deal.42
Over the years, I was able to get some important representatives of the German economy on board with us. To this day, our backers include chairmen and chairwomen of major corporations and small-business leaders, as well as compassionate individuals. All of our patrons have dedicated themselves to our cause, and only with their tireless support were we able to rigorously expand the Stroke Aid Foundation. In addition, volunteers from all over the country dedicate their time and their pro-social engagement to pursue our objective and bring our cause to the public. Together with representatives from the fields of politics, health care, medicine, science, and culture we were able to generate enormous public awareness of the disease. This awareness is vital for fighting the causes of stroke and for improving prevention, acute care, and victim rehabilitation.
The foundation works both nationally and internationally to coordinate activities around stroke research and treatment. It also acts as a network, and is especially supportive of model projects. Furthermore, the foundation supports many measures that improve the quality of care for stroke victims, such as the nationwide creation of stroke centers and the establishment of a comprehensive treatment protocol.
We have accomplished a great deal, but there is still a lot left to do. Even though we have contributed greatly to the prevention and treatment of strokes, the continued aging of our society means that the number of yearly stroke victims remains unchanged, at 200,000. Every three minutes someone has a stroke, and every nine minutes someone dies from one. It is still the third most common cause of death. In the face of the increased graying of our society, these are alarming numbers. By the year 2030, it is estimated that there will be twice as many instances of stroke among those sixty-five and older, and the German health system will face enormous challenges. The Bertelsmann Foundation is continuously engaged in a discourse with hospitals and insurance companies, and we continue to study how the fragmentation of our health care system leads to missed opportunities.
The German Stroke Aid Foundation tirelessly works toward finding sustainable solutions for stroke aid. Our social mandate calls for developing and supporting all medical services, so that quick and professional help can be provided to everyone. Beyond that, we are committed to supporting disease prevention and to funding innovative diagnoses and therapies.
Just as it was seventeen years ago, continuous professional development around stroke research is essential for saving lives. Any gap in medical knowledge can pose a danger for a stroke victim, for every minute counts when dealing with a stroke. Thus the establishment of nationwide specialized stroke centers is one of our most urgent goals. These so-called stroke units can establish an integrated treatment plan in the disease’s early stages. A treatment plan includes a quick and assured diagnosis, followed by multidisciplinary treatment. We are very proud that the stroke units that we initiated have improved patients’ prognoses by 25 percent.
One of the foundation’s main responsibilities will always be to create public awareness and to do fund-raising, which includes finding new donors and maintaining ties to old ones. To create public awareness, we work closely with the print media, television, radio, and Internet. Our carefully chosen charity events, like the Bertelsmann AG Rose Ball, the Semper Opera Ball (which chose us as a charity partner in 2008), and the golf charity tournament called Ein Schlag gegen den Schlag (A Stroke Against the Stroke), raise a generous amount of funds to support and advance our work.
My personal commitment to this cause has proven to be a full-time job. Endless travel, along with thousands of phone calls and meetings, are all part of my work. But I get back a thousandfold of what I put in. And as happy as I am with all that we’ve accomplished, I do know that this disease will keep us very busy in the years to come. I am pleased and grateful to everyone who continues to support our efforts.
My involvement with Stroke Aid made me very aware of the issue of preventive health care. It was very important to me that Bertelsmann lead by example, so we were the first company to offer its employees a stroke checkup. About seventeen hundred of our workers took advantage of it and had an examination. The results were alarming. Twenty-five percent of those examined were overweight and/or had high blood pressure and thus belonged to a risk group that had to be put under a doctor’s care.
Between 1996 and 1997, the German Stroke Aid Foundation, together with a number of corporate health care plans, organized a pilot study that took place at several large German corporations. We asked the insured employees to undergo a free preventive care health exam, and more than five thousand of them did.43 The study demonstrated that it is indeed possible to recruit large numbers of people to take preventive measures. In the face of escalating health care costs, preventive care is paramount for reducing costs. Based on my experiences with the German Stroke Aid Foundation (which is now led by my daughter, Brigitte, as its chairwoman), I was able to launch a number of projects and initiatives within the Bertelsmann Foundation. Following my husband’s wish, in June 1989 I launched a project in support of chiropractic medicine. Working closely with the University of Münster, in October 1994 we were finally able to open an academy for the advancement of chiropractic medicine, which provides training, research, and education.44
Soon afterward I initiated another health care project based on my personal observations. In the late 1980s, little was known about the effects of minerals and trace elements on the body.45 I learned about it when my husband became ill. I assembled experts from all over Europe, which led to the Bertelsmann Foundation’s project Minerals and Trace Elements. Running from 1990 to 2000, the initiative created tremendous public awareness. Today the effects of trace elements and minerals are common knowledge.
To this day, the research and promotion of healthy lifestyles is a main focus of the Bertelsmann Foundation’s health care topic area. My daughter, Brigitte, now leads this area, with great expertise and enthusiasm.46 So much still needs be done in preschools, schools, workplaces, and communities to increase health awareness from an early age and to integrate healthy behavior into people’s daily lives. The Bertelsmann Foundation has launched a number of programs to start a dialogue with political leaders and to promote local and national health initiatives. But our work is still cut out for us. Despite numerous efforts, healthy lifestyle choices are still not adequately promoted in schools. Many students have to deal with health issues like overweight or gross motor skill deficiency.
In addition, when compared to students internationally, German students are still not achieving their stated educational goals. Teachers complain of increased stress levels in the classroom, and many are suffering from burnout as early as their fifties. For these and other reasons, the Bertelsmann Foundation is seeking major reforms in the area of student health. We initiated Anschub.de as a regionally led but nationally applicable alliance of institutes in health and education. It is our common goal to create new incentives to foster the improvement of health care concerns in German schools.
After two years of project preparation, we have now begun to implement some practical solutions at several schools in pilot regions. A close collaboration among students, parents, teachers, and the administration is a must in order for the project to be successful. We hope that this pilot project will create new incentives for providing continuing education and training for teachers and school administrators, and that we can continue to advance these directives across the country.
In the corporate culture that my husband developed at Bertelsmann, a main objective is to promote the idea that the partnership between employer and employee includes a company’s health care policy. In these times of global economic challenges, many employees face increased responsibility, greater self-reliance, and more critical input at their place of employment. At first glance, this may sound ideal, especially when doing meaningful work. But realistically, for many workers this new independence leads to an expedited work pace, an increase in stress, and mounting insecurity. In light of this growing discrepancy between an individual’s wish for meaningful employment and the reality of today’s quickly changing workplace conditions, the Bertelsmann Foundation founded a commission of experts to investigate the future of corporate health care policy. Beyond general health care issues, the commission worked to identify the economic, social, and personal challenges that lie ahead for workers. Together with the Hans-Böckler-Stiftung, the commission launched a research group called the Initiative for Company Health Care Policy. It went on to develop a ten-point program to reform mandatory automobile insurance.
Our next project, called Contemporary Company Health Care Policy, grew from ecommendations by the commission. Instituting medical exams for executives is as much a part of our project as the funding and implementation of preventive health care programs within companies. Special notice must also be given to our project A Healthy Workplace During Demographic Change, which we created together with the Hans-Böckler-Stiftung and the New Quality of Work Initiative (INQA). With this project, we established a number of regional support facilities to maintain the health and productivity of the aging workforce over the long term. At these sites, small and midsize businesses have easy access to information about company health care policies.
The issue of nationwide improvement of corporate health care is to this day very dear to me. I have often wondered how to best implement the many different standards that corporations have for health care and preventive care in the face of today’s global challenges. For these policies in turn reflect attitudes toward issues of work-life balance—and the different ways these issues are handled are immense.
This is why in 2001 I created an international business network called Enterprise for Health.47 I was delighted to see this enterprise grow into the only business network of its kind in Europe. The group’s task was to examine workers’ health, motivation, and productivity in the context of economic and psychosocial factors. The ongoing global economic crisis has intensified many workers’ anxieties. Recent surveys have shown that young people, especially, view their working conditions as extremely demanding. In fact, many do not believe they will retire in good health. Especially alarming is that people fear losing their job more than they fear risking their health.48 This is a shocking indication of how much our values have changed, not only in our society but in the whole working world. The importance of our Enterprise for Health initiative can therefore not be underestimated. An international survey of the employees of Bertelsmann AG confirmed the close relationship among a partnership-based corporate structure and employee motivation and creativity, achievement, flexibility, and mental and physical well-being. Factors like the delegation of responsibility, creative freedom, and the opportunity for creative input contributed greatly to employee satisfaction and engagement. A well-run business not only does well financially; its employees are also less often sick!49
Personal incentive leads to financial success and vice versa. Having both can have a significant positive impact on an employee’s health. As we look toward the future, we as a society need innovative and strong businesses that are financially sound and can plan fiscally for the long term. The Enterprise for Health initiative contributed greatly to this understanding, as it demonstrated that workplace quality is an integral part of modern corporate structure.
My greatest hope is that employers and employees will find a new rapport, one that is rooted in personal responsibility and self-determination as well as solidarity and compassion. We will have made great strides if we not only generate new directions for health care management but stay the course in these difficult economic times. Any business that establishes its health care policies within the paradigm of a partnership-based corporate culture leads the way to a forward-looking, compassionate society.