Since I became aware of the possibility of infertility as a side effect of interferon therapy (formerly used as a cancer treatment) I have been desperately trying to make women of childbearing age and parents aware of it.
I have made presentations to numerous women’s organizations and to the Congress on Women’s Health, attempted to get the Society for Women’s Health Research on board and written extensively about the need for education and outreach programs designed to prevent the need to make this choice.
In other words, prevent the preventable when it comes to Hepatitis C.
First, prevent hepatitis C. Second prevent the need for immediate treatment through behaviour modifications to lifestyle + medical monitoring. Third, offer complete access to information concerning options prior to making decisions.
So, by chance I happened to watch the Today show segment September 4th, 2007 where former cancer patient, Lindsay Nohr Beck was facing cancer treatments as a young woman of 24. She asked a question that her doctors did not know the answer to: Would chemotherapy make her infertile?
Once again this comes to the fore. The discussion is likely available on the Today website.
Here are the key points from my point of view: doctors do not know about the impact of their advice outside of their own specialty or from the patient’s personal point of view. Few ask.
Do not expect your Gastroenterologist to know in depth about the possibility of infertility, neurological side effects or anything outside the narrow tube known as viral load reduction. That is, by and large, all they know well because it is mostly what is discussed in journals in their specialty.
For information on statistics of transmission in populations (public health), epidemiologists not gastroenterologists/hepatologists are better sources of information. however, on a personal level, risk is either 0 or 100%, in every case.
If your interest is in what the virus itself is capable of, a virologist, such as David Gretch at the University of Washington is the extert on the subject. Again, not the gastroenterologist or hepatologist.
Do your own research, consult other specialties and most importantly, have the different specialties you are receiving care from TALK TO EACH OTHER about your care prior to developing a strategy for you. You need to do your research as well to motivate them to do this.
A patient, as in Lindsay’s case, may have goals and values beyond the immediate treatment results, particularly if time is on her side. The patient and doctor are very often not on the same wavelength at all. Always clarify this with the doctor. Are you both on the same page? Is it emergent that you take the doctor’s advice? Do you have time to explore other options?
News? Not really. But it bears yet another discussion because the motivating factor is going to be the patient’s persistence.
But shocking, I am sure, to many advocates and patients in the Hepatitis C internet universe who remain doggedly in the “HCV is a liver disease and therefore, only a hepatologist or gastroenterologist knows anything about it” school of thought. Listen, consider the source, and then try to find some unbiased source of information. Check out the answers you are getting. Get a second opinion, even if in another specialty and insist on a independent point of view.
While these specialties do know about the results of clinical trials regarding the liver, few may know about the potential problems such as infertility in young women or young men, skin problems, autoimmune flares and so many other potential issues. People in clinical trials are vetted to exclude co-existing conditions that very well may apply to you. And they seldom look at the personal goals and aspirations of the patient. You need to know. As always, a clinical trial is NOT free treatment. It is a human experiment. Bear this in mind. You are not receiving care with your own personal life as a consideration. A clinical investigator is a researcher who is limited to the interests of the research, not the individual.
Interferon administered in childhood, adolescence and even young adults is one of those really grey areas that needs more research into problems that could arise, such as infertility. Doctors at the NIH have repeatedly said this is of high concern.
While new cases of HCV may, indeed, be decreasing in some populations, we don’t know that it is decreasing across the board until we have routine testing programs, education and outreach to populations at risk from a number of factors, not just one or two.
No education, outreach or routine testing + lots of tattooing, risk behaviour, including use of alcohol and high rates of childhood obesity in non IVDU populations = a generation at high risk of liver disease and potential complications of premature treatment (the specialists say, without context, that the younger you are the better chance of responding to te treatment) It also is a threat to the blood supply and organ and tissue donation programs, including live donor programs.
When are we going to figure out that we really should be preventing the need for the decisions in the first place? When are we going to identify the need to educate about the decisions being made that pre-date risk behavior and address them?
So, when people ask me: Why didn’t my doctor tell me this could happen? My answer is usually: The doctor didn’t know.
HCV is a systemic virus. It is not a liver disease. It can be prevented.
However, when infection is new, options exist to prevent progression of the disease. So, early detection is critical.
That means routine testing and moving the discussion beyond viral load, which is not the defining characteristic of the disease.
Lindsay has a website for those who want options regarding protecting fertility: Fertilehope.org
“Our mission is really simple,” Beck said. “We help cancer patients. Our goal is to make sure every patient is informed and then help them to make decisions.”
Hepatitis C Outreach Project’s core mission exactly. Since 1992 our goal has been to make sure people are educated, have access to information about HCV and access to testing so that they can make decisions about their health and life.
And, we need to use every resource, even when it is not HCV specific, or we think it isn’t. See, Linsay likely doesn’t know about the HCV epidemic and how affected her generation is by it. But she has founded a resource that is going to help people with HCV.
Heavy Drinking Exacts Toll on Women With Hepatitis C Thursday, January 25, 2007
Imbibing eliminates survival advantage over men, study finds
THURSDAY, Jan. 25 (HealthDay News) — Heavy drinking slashes the life spans of women with hepatitis C, a new study says.
Publishing in the February issue ofAlcoholism: Clinical and Experimental Research, the researchers noted that women with hepatitis C tend to live longer than men with the virus. However, this study found that heavy drinking eliminates that survival advantage in women.
The study analyzed 132,468 hepatitis C- and heavy drinking-related deaths in the Multiple Cause of Death files of the U.S. National Center for Health Statistics.
They found that women with hepatitis C who were not heavy drinkers died at an average age of 61, compared to about age 49 for women who had hepatitis C and were heavy drinkers.
Among men with hepatitis C, heavy drinking lowered the average age of death from about age 55 to age 50.
“Previous studies indicated that alcohol use is a risk factor for HCV (hepatitis C virus) disease progression, but they seldom examined the effect on women and men separately,” study author Chiung Chen, a research analyst at CSR Inc., said in a prepared statement. “Even fewer studies were able to examine the effect of alcohol on HCV mortality. Our study provides empirical evidence to fill the gap.”
CSR Inc. conducted the study under contract with the U.S. National Institute on Alcohol Abuse and Alcoholism.
SOURCE: Center for the Advancement of Health, news release, Jan. 25, 2007