August 5th, 2009 by Toni Brayer, M.D. in Better Health Network
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I sat with non-medical friends last night and the discussion turned to “health”, as it often does. One guy related the terrible story of a woman who went to her doctor with a certain pain which turned out to be cancer that had spread and she died within a week. The inevitable question; “How do you detect early cancer, so you can catch it and cure it?”
The answer I gave was less than satisfactory for my friends. In fact, they were a bit incredulous with the answer.
All cancer is genetic, in that it is caused by genes that change. Only a few types are inherited. Most cancers come from random mutations that develop in body cells during one’s lifetime – either as a mistake when cells are going through cell division or in response to injuries from environmental agents such as radiation or chemicals.
Different types of cancer show up differently in the body. We have screening tests for some types of cancer. We can detect early breast cancer with mammography. We detect early colon cancer with colonoscopy and hemocult stool tests. We do screening for cervical cancer with pap smears. Early prostate cancer can be detected with PSA, but it is not very specific. Skin cancers can be found early with visualization and biopsy.
What about brain cancer, testicular cancer, leukemia, sarcoma, lung cancer, ovarian cancer and a number of other less common malignancies? We have no screening tests for these diseases. Perhaps we will discover some gene test or imaging test or breath test in the future, but right now, a person would need to have symptoms that would point to the disease.
This is a scary thought for people…especially those who try to live healthy lives.
It is the randomness of life that has always made us feel vulnerable to things we cannot control.
*This blog post was originally published at EverythingHealth*
July 21st, 2009 by GruntDoc in True Stories
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The patient with a loving family, a job, good insurance and an abnormal test. Terrible.
When they come in, with their abnormal test (a sono in this case) from an outside place, from a doctor who sends them to your ED with ‘you need more tests’, it’s hard to keep the stiff upper lip. The family, well dressed and pleasant, just make it worse. I know what’s coming. I’d encourage them to run for the door, if I thought it’d help.
The sono usually says “…blah blah blah mass in the blah blah…further imaging is recommended…blah“.
While this usually isn’t a true emergency, let’s face it: the patient deserves an answer and their doctor has given up (or in) and has sent them to me. (And it’s not like I don’t know how to order CT’s, I do).
While waiting for the CT you imagine it’s all going to be nothing, unlike the ones before. Very very occasionally it’s good news, and relief all around.
The vast majority of the time that CT has been utterly horrible news for everyone involved. There are tears, and referrals, and ‘…I don’t know for certain, you need a biopsy, because diagnosis leads to prognosis…’ and I feel rotten for about a week. Unlike the family, for whom I’ve just unmasked Death, who get to have him as a constant companion.
I don’t know if it’s because they seem so normal, or I see myself in everyone in the room, or guilt. Dunno. But it’s horrible.
*This blog post was originally published at GruntDoc*
March 12th, 2009 by Stacy Stryer, M.D. in Health Policy
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By Stacy Beller Stryer, M.D.
I vividly remember my firsts in medical school – my first patient with cystic fibrosis who was so air hungry that he couldn’t even speak, my first teen who was constantly admitted to the hospital with an infection due to a genetic disorder that would eventually kill him, and my first 3 year-old patient with sickle cell anemia who almost died because her spleen decided to sequester many of her red cells. They were my firsts, but they certainly won’t be my lasts.
On March 9th, however, President Obama took a major step toward helping these children and so many others just like them. It gives me hope that someday there will be a few lasts. On Monday, he signed an executive order which relaxed restrictions on embryonic stem cell research and allowed federal funding for such projects. This is big. It reverses an almost 8 year policy that severely restricted such funding and the ability to use embryonic stem cells.
Embryonic stem cell research will open up the doors for potential cures and treatments for diseases such as Parkinson’s and Alzheimer’s, and for traumatic injuries, such as those that involve the brain and spinal cord. But the potential benefit of stem cells isn’t just for adults. Discoveries from embryonic stem cell research could save many lives and significantly reduce the suffering of children with a whole variety of diseases. Many medical centers, such as the University of Cincinnati, are or will soon be greatly expanding their stem cell research programs because of this policy change.
Why are embryonic stem cells so important for research? These cells are truly amazing because they have the ability to turn into any other cell in the body, such as blood cells, nerve cells, islet cells (which make insulin in the pancreas), or even entire organs. Plus, these cells can continue to duplicate, or make more of themselves, which is wonderful for both research and eventual treatment. Think about a newborn, that starts out as a single cell which then continues to replicate and differentiate until it becomes a fetus. It is truly a miracle and is the reason embryonic stem cells are so important.
Researchers at the University of Cincinnati want, through new research, to successfully treat fatal and other serious genetic disorders. Other medical centers will use embryonic stem cells to search for treatments for illnesses such as cancer, cystic fibrosis, diabetes, muscular dystrophy, and traumatic injury. The list goes on and on. Results will not occur overnight. It will be a long, expensive time intensive process. Through this process, researchers hope to learn how cells differentiate into specific types of cells and how genes turn certain cells on and off. The ultimate goal is to successfully repair or even replace ineffective, damaged and abnormal cells.
Some people are against the use of embryonic stem cells in research and treatment because they believe that, even though it can save lives, it also ends a life. This is an issue everybody has to think about on a personal and individual level. Currently, federal guidelines require embryo stem cells to come from extra embryos that were made when a couple underwent in vitro fertilization but were not used and, if not used for research, would simply be thrown away.
January 29th, 2009 by Dr. Val Jones in Audio, Expert Interviews
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Billy Tauzin has spent most of his life in politics. He has been a member of the House of Representatives as both a democrat and a republican, though his recent experience with a rare and usually terminal cancer (duodenal adenocarcinoma) radically changed his career path and trajectory. I caught up with Mr. Tauzin by phone at the America’s Agenda conference in Miami. You may listen to our podcast conversation or read my summary of our discussion below.
[Audio:http://blog.getbetterhealth.com/wp-content/uploads/2009/01/billy-tauzin.mp3]
Dr. Val: Tell me a little bit about your intestinal cancer and how that changed the course of your life.
Tauzin: I was in the process of finishing up a 25-year career in Congress when one night I had a sudden, massive bleed. I was taken to the hospital and was diagnosed with a rare cancer with a poor prognosis: duodenal adenocarcinoma. There was a hole in my intestine, right next to my pancreas.
I went to Johns Hopkins to have a Whipple procedure – and as you know a Whipple procedure is one of the most aggressive types of surgery anyone can endure. They kind of split you open like a fish, pull out your innards and restructure you. They had to remove part of my stomach, intestines, and pancreas, and then reconnected it with new ducts and channels. The Whipple was supposed to cure me, but unfortunately I found out (at a follow up visit at MD Anderson) that there was still cancer in my body.
The doctor told me very frankly that I was going to die.
Dr. Val: Tell me about the experimental drug that you were introduced to at that point.
Tauzin: My doctor reviewed my options with me: I could undergo another surgery, but that would probably kill me and would be unlikely to cure the cancer. They had no approved protocol for people in my position, but there was a drug (called Avastin) that had been successful in treating colon cancer – but was not yet approved for duodenal adenocarcinoma. The drug works by cutting off the blood supply to tumors – which meant that the drug could either damage my healing process or kill the cancer. My wife and I decided to take the risk because we had very little to lose. It was really a choice between “going to die” (my current situation) and “might die” (Avastin could cure me).
It’s a good thing we tried Avastin because it worked like a miracle. By the end of my first round of chemotherapy, the radiologist couldn’t even find the tumor on my CT scans. It was gone. I completed several courses of chemo and radiation and I’ve been cancer-free for over 5 years now.
Dr. Val: Did this miraculous recovery influence your decision to become the CEO of Phrma?
Tauzin: After I recovered from cancer, I was fortunate to be offered many different job opportunities. However, my wife looked at me and said, “You know Billy, you really ought to go to work for the people who saved your life.” And I thought, “If there’s a meaning in why I’m alive today – then surely it must be to use my experience to help patients like me across the world.”
Dr. Val: So what are you hoping to achieve at the America’s Agenda conference in Miami?
Tauzin: This conference is unusual in that we’ve gathered together a group of very disparate voices from different perspectives – labor, business, health plans, trade associations, academic medicine, etc. hosted by Donna Shalala (former Secretary of HHS) at the University of Miami. We are trying to define our commonalities so we can influence health reform more effectively.
Washington is all about differences – it’s partisan, it’s mean, and I’ve been on both sides of the aisle. I can tell you that there are good people in both parties, but they’d never know it because they consider each other enemies. What we’re trying to say here is: patients don’t sign in as democrat or republican when they register at a hospital. They sign in as sick people. This is not a partisan issue. We have a sick care system that needs to be a health care system.
Dr. Val: What should the Obama administration choose as their top priorities for health reform?
Tauzin: First of all we need to recognize that we spend 75 cents of every dollar on the damage done by 5 chronic diseases (including diabetes, heart disease, mental health, cancer, and lung disease). We must focus our system on early detection and prevention of these diseases, so that we manage them well and avoid the costly toll they take when untreated. We’re destined to be a poorer, sicker society if we don’t get insurance coverage for every American. We need insurance to provide early detection, prevention, and good management of our chronic diseases. How we do that is debatable. But we need to get there.
December 19th, 2008 by Dr. Val Jones in Opinion
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I was reading a good blog post about ethics violations in clinical trials in India, and was reminded of an interesting case in the U.S. Several years ago a 21-year-old woman (Abigail Burroughs) with terminal cancer (who had exhausted all treatment options) was denied the option of purchasing a drug that was in the final process of receiving FDA approval. The FDA ruled that terminally ill patients should not be permitted to purchase drugs until the drugs have completed the approval process, citing safety concerns. Their arguments also included that:
1. Patients cannot make a truly informed decision regarding whether or not to try a medicine that has not yet been fully tested.
2. Allowing access to drugs before they are FDA approved would undermine the clinical trial process.
3. If terminally ill patients could buy treatments, others would soon expect health plans to cover these costs for others.
4. Allowing access to drugs before they were proven effective would add to the public’s general confusion about evidence-based medicine and promote magical thinking.
I don’t know how you feel about this, but it makes me squirm a little bit. Although I appreciate the FDA’s position (and my colleague Dr. Jim Sabin has blogged about his support for the ruling) it just seems a little heavy-handed, especially in light of the details of the Abigail case. Here’s what I wrote to Dr. Sabin:
About the Abigail case… I think they were trying to get access to Erbitux for Abigail, and it was in phase III trials at the time (so there was mounting evidence for its efficacy – their request to purchase it wasn’t scientifically unreasonable.)
I have very mixed feelings about the FDA ruling. I understand that we don’t want to 1) set a precedent that would lead to insurers having to pay for expensive experimental therapies 2) discourage people from entering clinical trials 3) allow drug makers to profit from “false hopes” in terminal cases. However, couldn’t we add enough caveats to make it reasonable to allow patients who have exhausted all other options to purchase (with their own money) drugs that have shown promise but are not yet FDA approved?
What if we said that the drugs had to be in phase III trials, with enough evidence to suggest a plausible benefit for the patient? Terminal patients are rarely good candidates for clinical trials (I don’t think we’d be poaching from the CT pool), few can afford to buy monoclonal antibodies (and the like) on their own so if there were trials for terminal patients, they’d still have great incentive to join, and I’m not sure that just because a patient can buy a treatment that insurance will HAVE TO follow suit.
Something about limiting personal choices (for those who have the means to make them) seems un-American to me. There are very low risks of harm in monoclonal antibody treatments (so the argument that the FDA must err on the side of patient safety doesn’t really fit the Abigail case). Yes, it’s sad for those who can’t afford to buy every possible therapy – but why should we deny access for those who can? With the right caveats, I think we could allow people like Abigail to try every remaining option. But of course I agree that phase I drugs are just not far enough along the research pipeline to make educated choices about them.
Maybe Abigail was a casualty of the one-size-fits-all, population-based rules that are appropriate most of the time, but fail in exceptional cases. I predict that this sort of thinking (where evidence-based protocols are applied in a cook book manner to all patients with a given disease) will dominate the healthcare landscape in the coming years as we seek to reign in costs and do the best thing for most. I just wish there were a way to bend rules on the edges a bit. What do you think?
