Date: October 1, 2013
Clinical Trials Are Crucial
“A Cure for Sickle Cell” [Spring/Summer] could not have come at a more appropriate time—just after World Sickle Cell Day in June, and just before National Sickle Cell Disease Awareness Month in September. As a sibling of one with sickle cell disease, I have witnessed the pain crises and hospitalizations, and the interdisciplinary approach to care that is needed.
This article touches on an important issue: recruitment of African-Americans for clinical trials. If more African-Americans participated in clinical trials, the advances in medicine would benefit African-Americans. Because sickle cell disease primarily affects African-Americans, there needs to be a greater effort in recruiting African-Americans for these sickle cell clinical trials. By having increased mutual trust in the patient-provider relationship, and open lines of communication between patients and providers, one can increase the number of patients willing to participate in the studies needed to advance the cure rate for sickle cell disease.
Johns Hopkins A&S ’04
Consider the Costs of Sickle Cell
Your article on sickle cell disease shows the excellence for which the school is famous. However, you failed to segue that with the following article on genetic counseling. Sickle cell anemia, like Huntington’s chorea, could be eliminated or severely curtailed in this country with a simple lab test, identifying bearers of the sickle trait, combined with the appropriate genetic counseling.
It is all well and good to spend billions to cure this disease but think how much could be saved by eliminating it.
We have reached the point of diminishing returns in health care and that must factor in.
Owen Sear, MD ’62
Winter Haven, FL
An Omission and an Error
As an enthusiastic reader of Johns Hopkins Medicine, I feel compelled to point out an error and an omission of personal significance in “A Cure for Sickle Cell.”
First the omission. Your article correctly points to the pioneering work done at Hopkins on hydroxyurea for sickle cell disease in the 1990s. However, the drug was also investigated for thalassemia patients in the same time frame at Hopkins, though to lesser success. Two of my sisters, Elizabeth Rossetti and Gloria Rossetti, bravely participated in those sadly unsuccessful trials.
Now the correction: thalassemia was misspelled multiple times in your article. In the 1990s, the NIH called thalassemia the “orphan of orphans.” I hope that with a correction in your magazine, that will be less the case.
Disability Doesn’t Define the Person
My co-author, Sara Palmer, and I appreciated the positive review of our book Just One of the Kids: Raising a Resilient Family When One of Your Children Has a Physical Disability [Spring/Summer, p. 16].
We did, however, want to call to your attention a term that is not in use in this day and age and one about which we write in the book. Our approach—adopted universally in the disability community and professional journals—is that “crippled” is not appropriate disability etiquette. The preferred approach is person-first with disability descriptor (not “crippled”) following; for example, “Jan, a mother of three who happens to use a wheelchair.” Personally, I have never felt “crippled” but rather a person who is wife, mother, grandmother, professional, creator, and yes, by the way, someone who uses a wheelchair or scooter for locomotion.
End Gun Violence
I applaud Dr. Adil Haider’s article about his response to the violence that he sees firsthand as a trauma surgeon [Spring/Summer, p. 47]. Rather than limiting his concerns to the surgical care of the victim, he has spoken out on the epidemic of violence in the United States and the need to create interventions for violence prevention.
Gun violence is a public health issue. It impacts our profession, but more importantly, our lives and the lives of our loved ones. I appreciate physicians who speak out, displaying their social responsibility.
Lucille A. Mostello, MD ’70
Calling All Cardiologists … to China
After reading the letter by T. O. Cheng “An Ambassador to China” [Spring/Summer], I thought I might expand on what I have learned over the years about Chinese medicine and specifically about Chinese cardiology.
For the last seven years I have been invited to a meeting in Beijing, the GWICC (Great Wall International Congress of Cardiology). It is chaired and run by one of the leading Chinese cardiologists, Hu Dayi. Professor Hu has championed the causes of prevention of cardiovascular disease throughout China. He is a strong advocate of controlling obesity, diabetes, lack of exercise, smoking, and blood pressure, particularly in young people. He invites several experts in cardiovascular medicine from around the world to present their information at this meeting to an audience of about 10,000 or 12,000 cardiologists from all over China.
This is the premier cardiovascular meeting in the People’s Republic of China, and I thought cardiologists at Hopkins interested in prevention might be interested in participating in this meeting. I think they might be impressed by what the Chinese are trying to do to prevent (or at least delay) cardiovascular disease.
C. Richard Conti, MD ’60, MACC
Emeritus Professor of Medicine & Eminent Scholar Emeritus (Cardiology)
A Note of Gratitude
With regard to “Confronting the End” [Spring/Summer, p. 6], I am writing to note that the Johns Hopkins Metastatic Breast Cancer Couples Retreat would not be possible without the generous support of the Salisbury Family Foundation. To watch a video about this unique program of support for metastatic breast cancer patients and their significant others, visit http://bit.ly/JHBreastCancerRetreat.
University Distinguished Service Associate Professor of Breast Cancer