As we continue our interview series commemorating our 30th anniversary, this week we sit down with one of our earliest supporters and a current member of our Board of Directors, Dr. Marvin Sussman. As many of you will recall from an earlier history series interview with Emily Fudge and Cynthia Solomon, Dr. Sussman came to the Hydrocephalus Association (HA) when he received a phone call from Cynthia, one of our founding members, after her son’s shunt failed. Dr. Sussman, then Director of Marketing and Sales at Cordis Neuroscience Business (now Integra LifeSciences), personally called her back and, after they talked, supported the idea for a patient-focused organization for individuals living with hydrocephalus. Since that time, Dr. Sussman has shared his wealth of knowledge regarding hydrocephalus and medical devices to our membership in the form of papers, articles, blogs, and presentations. He has also served on our Board of Directors for 13 years and, in that capacity, has advised on numerous internal projects that have moved the HA agenda forward.
HA: What was your first impression of the association and its vision?
DR. SUSSMAN: When Cynthia called Cordis and suggested the founding of the organization, I thought that it was a great idea. It seemed logical and I was sorry that industry had not identified this need for patient-focused support. I wished we had initiated this.
Based upon Cynthia’s request, Cordis reached out to patients to try to understand and address their needs. Prior to that time, companies had focused on the clinician and not the patient. After the call, I initiated a project at Cordis to develop a patient manual related to hydrocephalus valves. This was the first patient manual developed by the shunt industry.
HA: From a personal perspective, why did you want to be involved?
DR. SUSSMAN: I viewed a patient-focused organization as an unmet need worthy of investment of money and time.
HA: What was Cordis’ level of involvement with HA in those early days?
DR. SUSSMAN: This was a priority of the Cordis Neuroscience Business and support came out of my budget. We donated a table-top booth for the Association to use at meetings. The Cordis Art Department developed the first logo for the Association. We provided patient-oriented graphics, shunt models, coloring books, shunt samples and teaching dolls with implanted shunts. Cordis was the first industry sponsor to donate money to support the first patient meeting of the Association held in San Francisco in 1988. In addition to making a significant financial donation, Cordis sponsored attendance by Dr. Salomon Hakim, the first person to identify Normal Pressure Hydrocephalus as a separate syndrome, and his son, Dr. Carlos Hakim, to attend and speak at the meeting. I introduced Cynthia and Emily to many of the members of the Medical Advisory Board when they attended the various neurosurgery meetings. Shortly after my first call with Cynthia, I received a call from Debby Buffa, another “Mom” interested in starting a patient support group – I suggested that she contact Cynthia to compare notes on how to proceed. This led to a long term interaction that culminated with Debby joining the HA Board.
HA: How has the relationship between the industry and HA developed over the years?
DR. SUSSMAN: Although I was not involved in the HA Board activities initially, I had a close relationship with Cynthia, Emily and Pip Marks and helped with the development of a number of the early publications and support materials prior to becoming a Board member. Conversely, that one call from Cynthia prompted Cordis to create the first patient manual on hydrocephalus. We also created the first pediatric patient manual in the form of a coloring book entitled Just Like Any Other Beagle, and teaching dolls with implanted shunts. There was a mutual positive impact in terms of educating patients on hydrocephalus.
In 1999, I began to consult with a company in the San Francisco area. Fortuitously, the Association added an industry representative position to the Board of Directors and asked me to serve in that position. I joined the Board in that position in 2000, representing “industry’s” perspective. The vision of uniting all facets of the hydrocephalus community – the patients, the medical providers, and industry – showed great foresight. After serving in this capacity, I was re-elected to the Board in a regular Board position and have served ever since. I will leave the Board, due to term limits, at the end of this year.
Cordis sold the Neuroscience business to Johnson and Johnson in 1996. At that time, I was serving as a consultant after having left full time employment at Cordis as the Director of Research and Technology late in 1992 to join a start-up that developed the first device in the field of Intensity Modulated Radiation Therapy (IMRT). The neuroscience business went through two more changes in ownership before eventually being acquired by Integra LifeSciences. The products are now part of the Integra product line. Integra still maintains a relationship with HA.
HA: What has your involvement with HA meant to you? Why do you stay involved?
DR. SUSSMAN: My involvement with HA has been very rewarding. It has allowed me to “give back” after a career in the development of products to serve the hydrocephalus market. In industry, you mainly get involved with the problems – i.e., the shunts that fail and the corrective and preventive actions that need to be taken. My involvement in the Association has allowed me to observe the successes — the patients who have been successfully shunted and have done well. Several years after I first became involved, the need for information for children was identified. In response to this identified need, Cordis developed the first pediatric patient manual – a coloring book on hydrocephalus and a teaching doll with a shunt implanted to help explain how a shunt is implanted. The coloring book was well received. It won awards for patient-focused materials. It was translated into many languages and was used around the world.
My introduction to hydrocephalus came when I was very young. My pediatrician had a son, several years older than I was, with hydrocephalus. I saw how hydrocephalus could impact someone’s life and what it did to family dynamics. Although I joined Cordis to help develop the first totally-implantable neural stimulator, I asked to become involved with hydrocephalus when I realized that Cordis was the largest manufacturer of hydrocephalus valves at that time. My association with HA has allowed me to stay involved in the field of hydrocephalus, even though I have no current formal association with any shunt manufacturer.
HA: What is the most funny or touching memory you have from over the years?
DR. SUSSMAN: I remember giving a presentation on “third ventriculostomy” when a parent asked why the “first” and “second” ventriculostomies were unsuccessful.
I find presenting at the patient-focused meetings most rewarding. It is great to interact with patients and their families and to realize how much support and information provided by the Association means to patients and their families.
HA: What else would you like to see HA do?
DR. SUSSMAN: I would like to see HA become more international, helping people in other countries get the benefits that HA offers to people in the U.S.
HA: Where would you like to see HA 5 years from now?
DR. SUSSMAN: I would like to see HA raise enough funds to support research that it is a significant force in finding ways to manage hydrocephalus.
HA: What message do you have for individuals living with hydrocephalus or their family/caregivers?
DR. SUSSMAN: You are not alone! HA is there for you.
HA: What message do you have for the general public about our association or about people who live with hydrocephalus?
DR. SUSSMAN: Hydrocephalus is a significant yet under-recognized problem. Hydrocephalus is as prevalent as other better known disorders but does not get the same level of support. Hydrocephalus impacts many more than those who have been diagnosed with it. Some remain undiagnosed and could benefit if this condition was diagnosed and treated. Anyone is one head injury away from developing hydrocephalus.