My name is Cora Connor and I am writing you on behalf of the estimated 3.1 million Americans affected by Sickle Cell Trait, a common blood disorder, affecting more than three hundred million people worldwide. Individuals with this disorder only carry one defective gene and generally live normal lives. These individuals are at risk for kidney injury, as recently recognized by the NCAA, and other illness. Many people (Sickle Cell Trait carriers, family members, and even physicians) are unaware that there is a rare form of kidney cancer associated with sickle cell trait, called renal medullary carcinoma (RMC). Renal medullary carcinoma is a very aggressive form of kidney cancer and is almost exclusively seen in young African Americans, under the age of 30. The prognosis of these young patients is dismal. Typical survival is under 12 months.

Renal medullary carcinoma was first discovered in 1995, but between 1995 and 2012, only 240 cases were reported to The North American Association of Central Cancer Registries (NAACCR). There are a number of areas of concern with regard to this cancer: We need to determine the true prevalence of RMC. Because we lack national health policy that reinforces education about sickle cell trait, many patients do not know their status, or their risk. Without standard screening tests, early detection is almost impossible. There has never been research funding for RMC, so treatment options are limited. Furthermore, most physicians are not familiar with the disease and lack knowledge to deal with this cancer effectively. When patients are able to reach doctors that have RMC expertise, they are usually out of state and many insurance plans will not allow their patients to leave the state of residence, even if there are no local options. This is particularly true for Medicaid covered children and young adults. As a result, many people are denied the option to receive expert care.

We have assembled a multidisciplinary focus group, initially through support from The William Guy Forbeck Research Foundation, with physicians, scientists, and lay participant advocates from across the United States, Europe and the Middle East. The goal of this focus group is to begin to raise awareness and to elevate the research for RMC. We are appealing to the National Institutes of Health (NIH) to promote renal medullary carcinoma research, awareness and disease intervention initiatives across the United States. We need to educate the public, as well as health care providers, about sickle cell trait and renal medullary carcinoma. We also need to launch a screening program and create a registry for this disease in order for health care providers to work collaboratively, nationally and internationally, to treat this disease and bridge the gap that currently exists in meeting the health care needs of the individuals suffering from this disease. Thank you for your time and consideration.

Respectfully,

Cora Connor