by Stuart R. Lessin, M.D. Director of Dermatology, Fox Chase Cancer Center, Philadelphia, PA
In 1806, when the first case of mycosis fungoides was observed and described in the medical literature, little was known about this form of cutaneous T-cell lymphoma (CTCL). It was not until the 1970s that physicians and scientists began to understand the cancerous origins and features of mycosis fungoides. Indeed, during this time, the term "CTCL" was introduced to encompass the diseases of mycosis fungoides and Sézary syndrome. This resulted from our understanding of the similarities between these two forms of cutaneous T-cell lymphoma. The growth of our knowledge of CTCL, like its patients, has suffered, in large part due to CTCL's relatively low incidence. As an "orphan disease," there has never been the level of resources available to CTCL patients, in contrast to other lymphomas and cancers.
Despite the seemingly slow progress, there have been exciting advancements over the last 10 to 15 years. Advances in therapy, in particular, have led the way. New biologic response modifiers, such as photopheresis and Interferon-alfa, demonstrated significant activity in CTCL and have prolonged survival in advanced cases. Most recently, two new therapies have been approved by the Food and Drug Administration for the treatment of early stage (Targretin® gel), intermediate and advanced stage (Targretin® capsules), and late stage (ONTAK®) CTCL. These products not only provide new therapies for CTCL patients, they also demonstrate a new level of commitment from the pharmaceutical industry to develop new therapeutic agents for CTCL.
With the recent cloning of the human genome and an unprecedented increase in the annual budget of the National Institutes of Health (NIH), the capacity of biomedical investigators to advance our knowledge of CTCL has never been greater. Along with this unprecedented convergence of resources, there has been the organization of CTCL patients into support groups. These support groups have filled a critical need of uniting CTCL patients and providing them with basic, but hard to find, information about their disease. Now, from these support groups, emerges a patient advocacy group, the Mycosis Fungoides Foundation.
The role of patient advocacy groups cannot be overstated. The power of patients and their families can transform nations' attitudes and commitment to human diseases. The Mycosis Fungoides Foundation is in an unprecedented position to play a leadership role in organizing and expanding government, academic, health services and industry resources for CTCL. For too long, CTCL patients have not had an effective voice in the halls of Congress and the NIH. Now, the Mycosis Fungoides Foundation officers are meeting annually with members of Congress and officials of the NIH. For years, academic medical centers struggled to sustain inter- institutional collaborations regarding CTCL studies. Pharmaceutical companies hesitated to test products in CTCL due to real and imagined obstacles in identifying significant numbers of CTCL patients. The Mycosis Fungoides Foundation is in the process of reversing these trends and providing a national and international identity to the thousands of CTCL patients through initiatives in education, communication, and research.
There is great excitement among physicians, nurses, and researchers who are involved in CTCL about the establishment of the Mycosis Fungoides Foundation. Among them, their opinions are unanimous -- that a CTCL patient advocacy group has been long overdue and fulfills a great purpose. I urge all of you to support the Mycosis Fungoides Foundation and strengthen its voice and leadership in improving the lives of CTCL patients.