September 2007
Monthly Archive
Do something!
Posted by thanbey on 26 Sep 2007 | Tagged as: Uncategorized
After 14 years of trying, I know that we cannot rely on the government to do it for us.
We can no longer tippy toe around about the lack of money available and the lack of a political will among the patient population. By far and away, the greatest number of those infected have yet to be diagnosed, so we have to go outside our own community and speak up. If we who know refuse, who will step forward for us?
Transmission may be occuring as we speak and it is time to ask oneself, “what am I doing to stop this?” The AIDS community has over 500 organizations doing outreach, HCV may have as many as 10. Maybe.
Here is what my husband recently wrote: Use it if you wish, but I ask you to cite HCOP and support our efforts. To our (HCOP) own detriment, and that of the HCV community, we have been willing to be in the background and this has been a mistake. People and groups need somewhere to focus attention and get the information and support for an effort in a community from an unbiased source. We are here to do that and have been here since 1992.
Here is Greg’s letter, written over 2 years ago (and updated for this post):
“I note that the newsgroup lists are being used for more than simply on-topic discussion, so I am going to put out a message to you, my coleagues and forward thinking folks.
For the past 14 years, my spouse and I have been working to increase awareness of Hepatitis C, locally, nationally, and internationally.
I am proud to report that my spouse, Teresa, has met with a great deal of recognition in this field, most notably with the CDC, the NIH, and currently with Departments of Health and policymakers at the state level in several states. Notwithstanding that she is not an MD, she has participated in original research at a major university site, served on scientific advisory boards and been recognized for her work in women’s and adolescent health.
I bet you didn’t know there had been a “tattoo Barbie” taken off the market. It was Teresa that made that happen. Tattoos are a risk for hepatitis c, not to mention that they remove a recipient of same from the blood, organ and tissue donor pool for at least a year and, possibly, for life. Barbie is marketed to 7 year olds and their parents.
We have tried in vain to bring this issue into the consciousness of church and African American communities. It is a cause worthy of the attention and support of a mainstream, middle class demographic, not just the “them” that the messages are currently directed at and which gives us the opportunity to distance ourselves from its effects.
We have known church members who have received liver transplants locally from hepatitis C, people who have died due to late diagnosis of hepatitis c and liver cancer and those unable to tolerate any intervention.
Many of you may even be infected, yet not be aware of it. Seven million Americans (less the marginalized populations such as IV drug users, incarcerated persons and children under 6 that are not counted) have been exposed to the virus, which is spread through blood contact, blood products, mother to baby, sexual transmission, tattoos, medical procedures, drug experimentation or addiction and, in many cases, through an unknown risk factor. Ever receiving foreign medical attention may be a huge risk factor for someone.
Got your attention yet? Fully 85% of those infected are not aware of their disease. In Portland, the rate of Hepatitis C is higher than the national average (2%) at 3.4% of the population. For the African American population, for whom treatment is mostly ineffective, the prevalence is a whopping 9.8%! There is no vaccine and the FDA approved treatments have had an impact of less than 10% overall.
African American males between the ages of 40-49 have the highest death rate from hepatitis C, followed by white males 45-55. The rate of liver cancer has been rising, primarily in white males, due largely to hepatitis C. Hepatitis C is the leading cause for liver transplant. Meanwhile the pool of potential donors is diminishing because we are doing virtually nothing to prevent this disease through education, awareness and testing. The rate of infection compared to HIV is 4:1. Four cases of hepatitis C to one of HIV. Did you have any idea?
What is our federal leadership doing about this? Well, the Surgeon General was stopped from sending out a letter of warning to the American people in 1999. No postage, they said. We (HCOP) called on patients to send one stamp to the Surgeon General to help out (Stamp out Ignorance) and they called after recieving tens of thousands of stamps , asking us to please stop the campaign.
Nothing of substance has been proposed since that time. It has been left to people like us to care, rise up and spread the word to be tested. That is what I am asking you to do. Spread the word and care about this. Twenty years ago, this was the struggle for AIDS awareness. Today, the HCV epidemic threatens to undermine the health of an entire generation. Ask yourself what you would have done then, if you had known then, and do it now.
An early diagnosis can save your liver and, possibly, your life. But we have no testing and screening programs save one…the VA. Veterans can get tested and cared for at VA centers around the country. Why? Because in 1992, Teresa and I submitted the first successful VA service connected disability application for hepatitis C in the United States for me. I was a Naval Corpsman in the Vietnam Era and have hepatitis C today from a needlestick. Today, I have a 100% service connected disability and work with the VA here in Portland as a mentor to other vets. We have five centers for excellence in HCV at the VA, one of which is right here in Portland.
Thanks for reading this far, but there is so much more. High rates among first responders, veterans and people who experimented with drugs and sex in their youth warrant a test. This is as much an issue of past behavior as it is for present action. But, in many, no sign of the disease is present for decades and no red flag is raised in the doctor’s office.
I am calling YOU to action. Spread the word among your firends, neighbors, co-workers and anyone you care about to get tested.
Email everyone and anyone. Let parents of kids who want a tattoo know the risks. Argue with your physician if you must to get a test, but get one.
Act to save lives, your own and those of others in your own spiritual and larger local community. Your personal resources (awareness, intelligence, education, money and contacts) are vital now. After reading this you will no longer be able to say, “I didn’t know and could, therefore, do nothing.”
If you are interested in more information about hepatitis C or the outreach project, this is the website: [url=http://www.hcop.org/”]www.hcop.org/[/url] Please use the donation links found there and the information and brochures on the site to put in the vestibule of the church on Sunday, the food bank bags, the bulletin boards at work, the grocery store or anywhere you can think of. How about delivering them in your neighborhood when you take your daily walk? There are numerous ways to spread awareness, but YOU have to do it. YOU have to see the importance of it.
I leave it to you to decide what you can personally offer, do. Summon what you know and what you have access to in order to help. I have believed since my arrival here that it is exactly the kind of issue we should be taking on.
Thanks for listening. Thanks even more for acting. Please, do something.
Greg Hanbey”
Infertility and hepatitis C treatment
Posted by thanbey on 06 Sep 2007 | Tagged as: Hepatitis C
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.
We strive to prevent the disease from spreading.
I still think we can. But time is running out.
Teresa Hanbey
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 of Alcoholism: 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
Copyright © 2006 ScoutNews, LLC. All rights reserved.
Fall Workplace giving campaigns
Posted by thanbey on 05 Sep 2007 | Tagged as: Hepatitis C
As fall is upon us so, too, are the workplace fund drives. Hepatitis C is proud to participate in employee giving programs that allow donations through payroll deduction or as one-time gifts and gifts with matching employer donations. This strategy has been used acxross the country and in major corporations who also match emploee gifts. From Microsoft to NIKE, to United Way, please take a look at your company’s policies and make hepatitis C , liver cancer and liver transplant your priority this year.
Contributions received will assist the Hepatitis C Outreach Project to continue and to expand our mission to improve the awareness of hepatitis C and the quality of information available to patients and healthcare providers.In addition, it will help us inspire researchers to include hepatitis C in their research proposals to increase the knowledge base of this disease, from women’s health, to neurological manifestations of hepatitis C, to co-infection, to risk factor identification and minority infection awareness, infection control in the tattoo and spa industry, and many other “off the radar” issues we face.
Many state governments have charitable fund drives for their employees. Each state has its own eligibility criteria. If you wish to designate the Hepatitis C Outreach Project for your contributions and your state requires information or documentation, please contact us and let us know what we need to do to qualify for your fund drive
.
Some United Way campaigns allow unlisted charities to receive your contribution. If Hepatitis C Outreach Project is not listed in your United Way brochure, you may still be able to contribute through the “Donor Option” feature that many local United Ways now offer. If your local UW has the donor option, write the Hepatitis C Outreach name and address in the space provided on your United Way pledge card:
Hepatitis C Outreach Project
7316 N. Mobile Avenue
Portland, OR 97217
Finally, many corporate giving campaigns allow a donor to write in a charity of choice. Lists are often provided of eligibleorganizations, but the list is not limited. You can add Hepatitis C Outreach even if it is not specifically listed.
You can still designate the Hepatitis C Outreach Project as your choice this year simply by writing the above information into the space provided.
The Hepatitis C Outreach Project is very grateful for our past contributors and we hope that you will continue to support our mission in the fall 2006 pledge drive in your community.
We are a 501(c)3 charitable organization under the Internal Revenue Service Tax Code.We are listed with Guidestar.org[size]
We can’t do very much without your help and support. Thank you from all of us and all of those who have benefitted from your generous donations.