Because a better treatment might be waiting for you. Are you in for the fight? Research medicine is where it’s at! Don’t give up your search until you’ve looked under every rock. Here’s how to follow my “no regrets” formula and achieve peace of mind.
Right now on the National Institute of Health’s clinicaltrials.gov database:
- 356,282 research studies in all 50 states and in 217 countries
- 71,756 clinical trials recruiting & not yet recruiting, worldwide
- 24,889 clinical trials recruiting & not yet recruiting, United States
- 669 Covid19 trials recruiting and not yet recruiting, United States
Mission Statement: My job is to provide the medical information you and your family or support group need about to make informed decisions about clinical trials.
“Everything that is done in this world is done with hope.” Martin Luther
Greetings, and welcome to my website; I welcome your feedback. I am your personal research guide and facilitator, a friend here to guide you through the vast and often complex world of clinical trials, and show you how to find clinical trials for your illness or medical condition or that of a loved one. I’ll also share the details of my own family’s experience.
Things can quickly become confusing if you don’t know much about the this world; a Google search I just did for “clinical trials,” for instance, yielded “About 279 million results.”
My job is to make all of this simple for you, and my hope is that you will find what you need to at least get going right on this website. If you are unable to tackle the job, whether for lack of time or resources, I can handle the entire thing for you, or any part of it. That’s what I do. No matter how serious your medical situation may be right now, take a deep breath, and let us begin this journey together.
When my father was diagnosed with terminal cancer, I had no idea where to turn for help, or even that clinical trials existed! Had it not been for a miraculous intervention by my boss at the time, a combination pep talk and guilt trip, I would have never taken action. But thanks to it, my brother and I were able to accomplish the seemingly impossible, getting our father admitted to a life-saving clinical trial at the National Institutes of Health (NIH) in less than a week.
I say “impossible,” because this was 1987, half a decade before the Internet. By comparison, finding clinical trials today is a cakewalk, thanks to ClinicalTrials.gov.
FINDING CLINICAL TRIALS ON THE NIH DATABASE
The National Institutes of Health (NIH) offers a wide range of free health resources at http://www.nih.gov, including primers on virtually every known disease and medical condition. NIH’s crown jewel is its database of more than 355,000 clinical trials, the largest on the Web.
Just logon to http://www.clinicaltrials.gov, plug in the name of any illness or medical condition, and you will see a list of clinical trials offered throughout the United States, and in much of the world. You can search by nation, state, city, zip code, or number of miles from your home, and also by the name of any drug or treatment.
IMPORTANT: Just because a clinical trial is listed on the NIH database, however, does not mean it has been evaluated by the U.S. Federal Government or is in any way endorsed by NIH, unless it’s actually a trial actually being conducted by NIH.
SIX STEPS TO ENROLLING IN A CLINICAL TRIALS
Here are the six steps to enrolling in a clinical trial, according to NIH:
- Gather complete information from your doctor about your illness. (You’ll need the precise medical name of your condition, what stage of illness are you in, and all drugs and treatments have you already received.)
- Find clinical trials by logging onto the www.clinicaltrials.gov.
- Take a closer look at the trials that interest you.
- Contact the team running the trial.
- Ask questions.
- Make an appointment.
SO, HOW CAN I HELP?
I can help anyone needing a helping hand with the entire process, or provide just a little bit of advice or coaching to get you going and/or keep you going. Here is a list of my services:
- I can find clinical trials for any diagnosed illness or medical condition;
- I can provide important information to help you figure out which clinical trial you want to enter, if offered a choice between two or more;
- I can contact the clinical staff associated with any clinical trials you are interested in, obtain all the information you need, and even schedule phone appointments and in-person appointments for you; and
- I can find clinical information from peer-reviewed medical journals for you on the drugs and/or treatments that will be used in any trial you are considering entering, and
- I can quickly train you and/or your loved ones on how to research clinical trials.
FREE PHONE CONSULTATIONS!
I offer free, 15-minute phone consultations (please see my SERVICES page), and if I am unable to find any trials for you, there is no charge, no matter how much time I put into it. I love doing this work, and nothing brings me greater joy than connecting a patient with a clinical trial that offers new hope. I also charge on a sliding scale, so if you don’t earn much, you won’t pay much.
The first step is to send you in-depth medical information about your illness or medical condition that reads in plain English. So many patients know little more about their illness than what they learn in a relatively brief medical appointments. The information I provide comes only from legitimate and respected sources such as NIH, the National Cancer Society, the American Heart Association, leading hospitals such as the Mayo Clinic, and a wide range of other trusted sources, depending on your illness. Yes, this is information that many of you can get on your own, and if so, I encourage you to gather it right now.
But if time is of the essence and you do not want to reinvent the wheel, or if everything is a blur, I can help—stat (the medical term for immediately). Perhaps you are overwhelmed simply coping with your illness or that of a loved one. Perhaps at this moment it makes sense to for you to hire out the research to someone who is experienced with the system, understands the lingo, and knows “insider’s tips & tricks,” so to speak. If that is the case, this is what I do.
HYPE CAN BE DANGEROUS, AND FALSE HOPE CAN BE CRUEL
I must put things in perspective, however. “Hype can be dangerous, just as false hope can be cruel,” writes Charles Graeber, author of “The Breakthrough: Immunotherapy and the Race to Cure Cancer,” an excellent book published in 2018 and available at major booksellers.
I don’t want to offer anyone false hope, and the truth is, there simply is not a clinical trial available for every condition, and not all who enter a trial will find an improvement in their condition. There is a risk to every trial, and in rare situations, people have actually died from an experimental drug or treatment. On the other hand, many have died of diseases that might have been treatable with the right clinical trial.
“There’s a natural tendency to invest too much hope in a new science, especially one that promises to turn the tables on a disease that has, in some way, touched every person’s life,” Graber writes of cancer. But in the very next line he points out that “[Immunotherapy treatments] aren’t overhyped theories or anecdotal wonder cures, but proven medicines based on solid data. Immunotherapy has gone from being a dream to a science.”
Graber notes that the new understanding of how cancer “tricks and hides from the immune system” have created “a gold rush in research and investment and drug development,” with thousands of new clinical trials underway. Indeed, he writes, “The research is advancing so rapidly that several drug manufacturers have successive generations of drugs stacked up in the clinical trial pipeline like planes waiting for clearance at LaGuardia, requiring new FDA ‘fast track’ and “breakthrough designations” to speed them through the approval process to cancer patents who don’t have time to wait.”
WORK WITH YOUR OWN DOCTOR? YES, BUT DON’T STOP THERE!
In similar fashion, advanced treatments for a broad number of diseases other than cancer have also been made possible by breakthroughs in genomic science, ushering in a new golden age of medicine. Genomic medicine and biotechnology, for instance, enabled scientists and physicians to create both the Pfizer and Moderna Covid19 vaccines, which are both based on messenger RNA technology (mRNA) in less than one year – whereas it used to take eight to 12 years to create a wholly new vaccine!
In the very first chapter of “Breakthrough,” Graeber writes of a real cancer patient, ‘Jeff,’ who was sent home to die, after undergoing brutal, debilitating, and expensive treatments, completely unaware that a what proved to be a lifesaving alternative was available in a clinical trial. His doctors “saw no option but to give up. And so, the logical thing for Jeff to do was to follow the experts’ lead and give up too.” Thankfully, he did not. And neither should you, I would argue, if you’re in for the fight! Why not take a look and just see what’s out there?
NIH recommends working with your current doctor to find clinical trials, and I strongly agree, but don’t stop there! Some doctors, particularly if they are at research hospitals, may actually know of an appropriate clinical trial, and even help you get into it, but many, if not most, simply do not have the time or resources to give you all the help that you need.
So please, start your search for clinical trials with hope, otherwise you will lack the energy to move forward. Not with false hope, but with realistic hope. And know that there are people out here like me who will scour the Internet to find what’s available. For some, breakthrough treatments await, thanks to advanced medical and genomic science. Let us see if together we can find a clinical trial for you.
THE FOUR PHASES OF CLINICAL TRIALS
Clinical trials, according to HIH, “typically go through four phases to test a treatment, find the appropriate dosage, and look for side effects. If, after the first three phases, researchers find a drug or other intervention to be safe and effective, the FDA approves it for clinical use and continues to monitor its effects.
“A Phase I trial tests an experimental treatment on a small group of often healthy people (20 to 80) to judge its safety and side effects and to find the correct drug dosage.
“A Phase II trial uses more people (100 to 300). While the emphasis in Phase I is on safety, the emphasis in Phase II is on effectiveness. This phase aims to obtain preliminary data on whether the drug works in people who have a certain disease or condition. These trials also continue to study safety, including short-term side effects. This phase can last several years.
“A Phase III trial gathers more information about safety and effectiveness, studying different populations and different dosages, using the drug in combination with other drugs. The number of subjects usually ranges from several hundred to about 3,000 people. If the FDA agrees that the trial results are positive, it will approve the experimental drug or device.
“A Phase IV trial for drugs or devices takes place after the FDA approves their use. A device or drug’s effectiveness and safety are monitored in large, diverse populations. Sometimes, the side effects of a drug may not become clear until more people have taken it over a longer period of time.”
BEGINNING WITH HOPE: DAD’S STORY
On an utterly unremarkable afternoon in January 1987, I was working in my office in Washington, D.C.’s Foggy Bottom neighborhood, when I received a disturbing phone call from my father. He had just been diagnosed with terminal prostate cancer. Prognosis? Grim. He could be gone in six months.
To regain a sense of reality, I shared the news with a few colleagues. Soon there is a rap upon my office door, and in comes in “The Big Guy,” my late boss, an enormous man both in size and in spirit, and the publisher of the magazine I wrote for. Starting with a somber “Hey Pal, I just heard about your dad,” he shut the door, which did not open again for a full hour, during which occurred the most unexpected, unusual, and auspicious meeting of my life.
Don unleashed a spellbinding oration on the promise of clinical trials and cutting-edge medicine, saying that, “I don’t don’t know a damn thing about prostate cancer, and neither do you, but you damn well better find out real quick, or you’re never going to forgive yourself.” He concluded by saying, “I want you to go right out to NIH (located in Bethesda, Md., right outside of Washington, DC), and don’t come back until you can look me in the eye and tell me you found the best possible treatment for your dad. Take all the time you need, and do not worry about your job – it will still be here.”
Inspired, I immediately called my older brother Bob, a college professor living with his family in Virginia Beach, Va, and juiced him up in similar fashion. He too left his job on an emergency basis and drove to my place, arriving over the weekend, and together we hatched a plan. This was half a decade before the Internet, so come Monday morning we drove immediately to the National Library of Medicine, just off the main campus of NIH in nearby Bethesda, Md., to begin our research.
But first we called Dad: “Are you in for a clinical trial? It’s a long shot, but we are gonna see what is out there and give it our best shot, I promise you.” And Dad, weak and frightened though he was, was all in!
It’s still hard to believe, but by Thursday of that week, we had Dad tentatively enrolled in a Phase I clinical trial taking place right on the NIH campus, “A Pilot Trial of Chemohormonal Therapy for Advanced Cancer.” Also known as Study Number MB-206, it was a risky, Phase I trial. Dad went for it, however, because it offered the best chance, we all thought, for a breakthrough.
GET YOURSELF WELL, AND LIVE LIFE TO FULLEST!
The treatment employed quite a provocative one-two punch: For all but three days of the month, he received two drugs to suppress his body’s production of the testosterone the cancer feasted on, but on the remaining three days he would be given an artificial testosterone to actually spur the cancer growth, while he underwent chemotherapy.
The reasoning was that the cancer, which grows extremely rapidly on the artificial hormone, would suck up the deadly chemotherapy, further shrinking it. And it worked. After several months of treatment, Dad was in complete remission, with undetectable cancer. The spots on his bones and his liver disappeared. He even stopped chemotherapy, although he remained on the androgen blockades for life.
The bottom line? Dad suffered one serious setback six years into his treatment, but NIH put him on new protocol, testing the efficacy of aminoglutethimde against prostate cancer. Dad hit the jackpot again, bounced back, and lived well into his 81st year, and what wonderful, joyous years they were! He enjoyed robust health, cancer aside, and our extended family made the most out every single day, knowing each one was a gift.
We met every Saturday morning for a huge family & friends breakfast at Bentley’s Restaurant in Falls Church, Va., filling the back room with up to 20 rowdy people spanning many generations: babies, toddlers, teenagers, and grownups of every age.
On Saturdays in the fall we all met at the erstwhile “Cozy Inn” in Thurmond, Md., and hiked in the nearby Catoctin Mountains, not far from Camp David. Dad came to enjoy the company of four more grandchildren; he and Mom celebrated their golden wedding anniversary, and so much more. Dad, a notorious tightwad, amazed us all by buying a new house, a beautiful new minivan, his first (yes, really) color TV, and a riding lawnmower. And they travelled.
Life was suddenly exciting once more. He and Mom would head across the Chesapeake Bay to Maryland’s Eastern Shore at the drop of a hat. Or down to Mississippi, to visit our family there, or just about anywhere. “Every day is Saturday,” Dad used to say, and he was up for just about any adventure. He lived fearlessly, and in many ways as a changed man, not regretting what he didn’t have, but savoring everything he did have, owing to his continuing treatments at NIH. Yes, these years were a very sweet, special time in all our lives.
THE NO REGRETS FORUMULA
Dad lived nearly 10 more years of a robust, healthy life, and I owed it all to Don Scott. Why? Here is the key point: Because without his intervention, we would have simply given up.
er that auspicious meeting, I was seized with hope, newfound energy, and a passionate, unrelenting drive for success. The kernel of wisdom Don imparted in that lecture was that it is okay to fail, if you know in your heart that you did your best. Perhaps no better treatment was available; we would never know, however, unless we looked. Likewise, we might find a promising trial, but it may not work. But, there again, we would know in our hearts that we had given it our best shot. Under either scenario, there would no regrets.
I cannot tell you how grateful I still am for that meeting, because it motivated me to do things I did not realize I was even capable of doing and to reach for help I didn’t even know was available. I have since also applied this “no regrets” formula to help me achieve success in other areas of my life. It works.
So, I am here to tell you today, do not give up! If you are in for the fight, look under every rock and turn over every rock and leaf until you find a clinical trial that offers you a chance. Let me close by saying that I pray for all of you the greatest blessings and wish you the greatest of luck in your quest for a clinical trial. Let me know if I can help in any way.
A MESSAGE FOR FRIENDS AND FAMILIES OF PATIENTS
I want to close by addressing those of you And here I must directly address friends and family members of patients who might benefit from a clinical trial: I am almost breezy and chatty on this website, and I make it all sound so easy. But it is almost impossible for many patients with serious, life-threatening illnesses. They need an advocate and researcher. They need your moral support and your brains and vigor, and they need you to bird-dog and find the right trial for them.
A MESSAGE FOR LOVED ONES OF PATIENTS SEEKING CLINICAL TRIALS
I want to close by directly addressing the family and friends of patients who are ill and seeking clinical trials. My goal with this site is to show you just how easy it can be to find trials. In an effort to simplify things, however, I have perhaps made it sound almost too easy. But sorting through dozens and dozens of clinical trials and trying to find the one that offers the best shot one can be anything but. It may seem straightforward and doable to you, if you are not the patient, with the Sword of Damocles hanging over your head.
It can be almost impossible for many, if not most patients with serious, life-threatening illnesses to do this work. They need an advocate and researcher. They need your moral support and your brains and vigor, and they need you to bird-dog and find the right trial for them. And they need your unconditional love throughout this process, though it may be tough at times. But the rewards are more than sufficient. I can tell you without hesitation that working with my father and his care was the most rewarding task I have ever undertaken.
Godspeed!
Clinical Trials Research Buddy 