Hepatitis C Treatment Journal - Post 3

Post 3 - Hep C Treatment Journal

Middle of May - About Twice as Long a Wait for Test Results as Promised

Four weeks ago I was told that the genotype testing I completed would take a couple weeks for results to return.  I don't know about everyone else but to me "a couple" is two.  If it were going to potentially take longer, why can't people simply say, " a few"?


I had prepared myself to hear news in about 2 weeks time - bad news (that yes, I'm eligible for treatment) or worse news (that I'm not).  Now I wait here in the fourth week chewing my nails relentlessly day after day......after day.  I could, I should just call.  Find out if my results came in and they've just been sitting on them, considering a ransom maybe, or biding their time, waiting for me to relinquish the last shred of sanity I have selfishly been clinging to....
Maybe tomorrow I'll call.


So its now tomorrow and I called about my results for genotype testing.  This is the test that will tell me whether I am one step closer to treatment.  Some genotypes are more treatable than others, or perhaps more accurate is that some types have effective treatments developed and others do not.  In North America and other parts of the privileged world most people who are positive for Hep C have genotype 1, the most researched for treatments.  The type which it turns out that I have.


Also as it turns out my treatment staff have had my results for some undetermined amount of time.  "Did you try calling me?"  Yes of course they had tried "a couple" times!  "Oh I see, a couple....". (that vague term which for some really means indeterminable)   "Well did you leave messages?"  Though I knew damn well they had not, I was told that they had tried and were unable to leave a message for some reason they can't quite remember!   OK......???? and WTF???


My immediate thoughts after making an appointment for the next round of blood work and then hanging up, were;
What a half assed, lax attempt to reach me.  If any attempt was actually made at all.  Typical medical, elitist, classist, discriminatory, mentality - all drug users are hard to reach, unstable, disorganized and probably won't return staff calls anyway, so we'll get to it when and if we get to it - all good.


These were thoughts that crossed my mind immediately.  They may or may not have been accurate analysis of what was going on.


Staff and I made a telephone appointment to discuss my results, an appointment which staff also missed by the way.  Though to their half assed credit they did make efforts after that to contact me by calling until they reached me (for which I am grateful).  Who knows what goes on behind the scenes.  What kind of pressure people are under, what environments they may be working within.  Whatever the case may be at the particular Toronto medical establishment I attend (one that I chose because it offers an entire Hep C treatment and support program) I find their handling of my treatment to this point - lacking.  For some, it could be downright dangerous.


What must it be like for people in less privileged parts of the world?  Where resources, staff, and training are often in short supply.....I guess I should count myself lucky?


About HCV: Government of Canada - Hep C

Hepatitis C Treatment Journal- Post 1

Post 1

Personal Experience with HCV Diagnoses

 I contracted HCV the very same way many women contract it... from sharing equipment with a trusted partner.  I naively believed that he would disclose to me (out of respect and care) if he were HIV or HCV positive. Silly me!  He was Hep C positive, he knew it, and he didn't tell me about it.   

What an asshole right?

Yes and No.  If there were not such a severe stigma associated with HCV and hence with disclosing, maybe he wouldn't have been so scared to tell me.  Is fear of stigma and judgment a good enough excuse?  Not in my books, but it happens - a lot.  
He, himself contracted HCV from injecting and sharing needles in prison.  If sterile equipment had been available to him and to others in his shoes maybe there wouldn't have been anything for him to disclose to me in the first place!



We had a friend over one day who disclosed that he had contracted HCV in prison.  My partner blurted out that he also had Hep C, contracted while in prison.  This is how I found out in our 4th year together that he had Hep C, and why I suspected that I likely did too.  I had never shared injection equipment with anyone else at that time and was careful about protection in non-long term relationships.

Diagnoses Confirmed
 
I was diagnosed with HCV about 10-12 years ago.  I have done little else by way of monitoring and/or treating it since then.  I have however recently initiated the process for HCV genotype testing and will be writing about my experiences including the subsequent process of treatment if it is deemed necessary.  I will be participating in a program run by a community health centre in Toronto.  I chose this particular program because it offers a somewhat holistic approach to treatment.  What I mean by "somewhat" holistic is that the treatment is based pretty heavily on the medical model (for obvious reasons, but hardly supportive of holistic healing).  However, it also offers individual and group counselling/support - which makes it slightly more holistic.  

Next Steps
 
My first appointment is later this month.  I have already cancelled once and played phone tag with the program nurse for about a month after that.  Not sure if this was nerves or simply that other thing which causes me to cancel appointments and avoid people...depression.  In either case, I'm committed to attending the next appointment.

Hepititis C Testing and Treatment - Post 2

Post 2 
(if this journal post on Hep C treatment was of interest to you, try post 1 and my most recent - post 3 from last week)

March 2012 – sometime in about the 3^rd week of the month.

So what else is new?  

I have difficulty with structured appointment times (not to mention, structure in general) and managed to miss my first screening appointment for HCV (hepatitis C) genotype testing Tuesday morning by 20 minutes.  Not bad really, but apparently nurse “M” disagreed and had left for lunch.  Reception invited me to come back at 1 o’clock when M was set to return.  I stayed and I waited.  At 1:00, they informed M was to be 20 minutes late returning from lunch!  Payback?  Probably not, but maybe....  In any case I had another appointment and needed to leave.  But knowing myself and knowing that there was no way I would return any day in the near future, and being increasingly aware that I’ve already waited about 10 years too long to look into my possible need for HCV treatment, I asked about any openings later in the day and lucked out with a 3 o’clock opening.

So finally at 3:00 pm and after some struggle, and wondering why the hell I didn’t schedule this appointment for late afternoon in the first place (especially considering my hatred for morning), I met with M, the community health Nurse.  Very sweet, considerate, and informed.

Symptoms: Something to Look Forward to?

Depression, nausea, vomiting – things to expect should Hep C treatment be necessary. 

Weight loss - the one side effect which comes as a bonus for my trouble and which I’m actually looking forward to.  Given that depression has been a constant companion since Sept 2000 when my children were kidnapped by the state, a constant companion which never departed (surprisingly) when I won the fight to bring my kids back home in 2007.  

Steps to Treatment: Genotype Testing
 

Side effects of this 12 year depression?   Loss of:  joy and motivation – Gain: pounds of fat.  So yes I’m looking forward to depression which culminates in weight loss instead of weight gain for a change.

The first step (recent step) in this particular little HCV exploration party was to see my family physician who took blood and confirmed only that I had been exposed to HCV at some point.  Facts I’ve long been aware of (13 years).   Blood taken today will confirm which genotype I have and whether its a type known to respond to the standard treatment, the “cure” for HCV infection; Interferon, a form of chemotherapy . Yeah!!!

About a week to go before the results come in and I know for sure if chemo will be in my immediate future.....fingers crossed for weight loss!

Congress’s Holiday Message to People Who Use Drugs: Drop Dead

And the craziness continues in the land of the free and home of the brave....

Congress’s Holiday Message to People Who Use Drugs: Drop Dead

December 16, 2011 | by Zoe Hudson

Fifteen days ago, President Obama delivered a major speech, recommitting the United States to fight AIDS here and abroad. This week, Congress will once again prohibit the use of federal funds for syringe exchange. Almost 30 years into the epidemic, we are still having this fight. This ridiculous, unproductive fight. It  adds up to this: we deny people at extremely high risk of HIV the means to prevent infection.  
OR NOT!                 
By any measure, syringe exchange works. It dramatically reduces HIV infection without increasing drug use. Do you want to get drug users into treatment for addiction? Syringe exchange helps. Do you want to ensure that police officers aren't stuck with dirty needles in pat downs?
Syringe exchange helps. Do you want to reduce the number of people on costly lifetime treatment for AIDS? Syringe exchange helps. Do you want to remove dirty needles from parks and playgrounds? Syringe exchange helps.
There is absolutely no dispute about the scientific evidence on any of these fronts. Eight federally funded reviews found that syringe exchange reduces HIV without increasing drug use. It is endorsed by every major medical association, including the American Medical Association, the American Academy of Pediatrics, and the American Nurses Association. In 2008, the CDC concluded that the incidence of HIV among injection drug users had decreased by 80 percent in the U.S. over a 20-year period in part due to syringe exchange programs.

Two years ago Congress lifted the ban, giving states the option to use federal funds for syringe exchange.
Unfortunately, the reinstatement of the funding ban deals a lethal blow to HIV programs that are proven to work. State health departments with firsthand experience responding to injection drug use understand that peer-driven needle and syringe programs make their communities safer and healthier. In the midst of the fiscal crisis, many of these programs are being cut or scaled back, making federal funds all the more important. But sadly, once again politics trump public health.
Twelve percent of all new HIV infections in the U.S. are among injection drug users. We could bring that number to zero—and help people access treatment for addiction at the same time. But the Congress chooses not to.

Russia and Harm Reduction

In Russia, numbers of those with problematic drug use issues have been increasing. This is especially true where opiate narcotics are concerned.  The numbers of those dependent on heroin are increasing at alarming rates.  Reasons for this trend reflect the usual culprits.  Poverty, increased desperation, trauma.  Once hooked, users have little chance of escape.  Russia bans substitution therapies like methadone.   Government officials and health experts alike have publically stated that substitution therapies are "no way to treat addiction."  Leaders in psychiatry and addiction issued this statement: “The effective way to solve the problem of drug addiction treatment is an intensive search for and introduction of new methods and means that focus on complete cessation of drugs use by patients with addiction, their socialization into a new life style free from drugs, but not on exchanging from one drug to another.” With the high levels of poverty in Russia many users cannot afford to purchase heroin.  Desperate to shake off the terrible flu like symptoms, users have turned to a homemade substance referred to as "Krocodile". The technical term, desomorphine is a derivative of morphine.   It is cheap and made fairly simply from codeine, which does not require a prescription.  It won its street name, Krocodile because of its effects on the user.   Injected without further purification, Krocodile literally rots the flesh.  Skin becomes scaly and green. These symptoms are actually signs of phlebitis and gangrene. Some studies have estimated the life span of Krocodile users to be 2-3 years.

Russia is facing a time of great civil unrest. People are tired of the awful conditions under which they have been forced to struggle for many years, tired of the lack of commitment from their leaders regarding change, and sickened by wide spread corruption. While “leaders” feel they are entitled to take from the people, even while the people do without basic necessities.

It has finally become widely accepted in many parts of the world that those who use drugs problematically do so in order to temper emotional agony.  Finally the misinformed belief that  drug use itself is the problem has been put to rest. There are underlying issues which make it undesirable to stop. If getting high is your only means of escaping from terrible life circumstances, and depression, then people really have no right to demand that you simply quit without providing opportunity and hope.

Unfortunately many countries like Russia criminalise drug use itself, and the treatments (save abstinence) which are known to save lives. This creates conditions where drug users are unnecessarily exposed to HIV, and HCV; a mentality of judgment; stigma which prevents people from seeking medical treatment; and high rates of preventable deaths.

Russia is faced with the fastest growing HIV/AIDS epidemic in the world. And unlike many other countries sex is not the primary method of transmission. Injection drug use accounts for as many as 80% of new infections. See the following stats on Russia from 1996-2006 as documented by the UN.

• Of the nearly 400,000 people living with HIV approximately 14,000 are receiving treatment.

• 55% of those diagnosed with HIV are persons between 15-24 years of age.

Despite the degree of hopelessness, there are those who are fighting back and speaking out.

Alexei, a former prisoner advocates for drug users one person at a time. His sister is HIV positive and terrified to seek medical attention for fear of judgment and mis-treatment.

Read thier story here:
Tear Fund - Hope to the Marginalised

Masha Ovchinnikova is an activist and project coordinator at FrontAIDS, a Russian AIDS activist group in Moscow. The group advocates for expansion of needle distribution and exchange programs, as well as access to discrimination free AIDS treatment and for methadone maintenance programs to be widely instituted.

See their web page at: 
FrontAIDS

World AIDS Day 2011

  

Zero new HIV infections. Zero discrimination. Zero AIDS-related deaths.

December 1st is World AIDS Day.  Its a good time to remind ourselves of the work left to be done with regards to the unnecessarily high risk of contracting HIV/AIDS and HCV for those doing time in Canadian jails.  This of course is directly related to Canada’s propensity for cruelty regarding the treatment of those who use illicit drugs.  We treat drug use as a criminal rather than a health issue.  We criminalize and  incarcerate people who are likely already suffering terribly.

See:

Historical Trauma, Sexual Abuse, and HIV Risk Among Young Aboriginal People Using Injection Drugs

Childhood Trauma and Injection Drug Use Among at Risk Youth

Not only do we remove them from whatever support systems they may have had, and force drug users to abandon their children, their homes and belongings, but we then lock them (known drug users) in places and refuse to provide them the healthcare services they need such as access to harm reduction equipment.

"A 1995 Corrections Canada survey found that prisoners in federal institutions are 30 times more likely than other Canadians to have injected illegal drugs."

                                               

Two Canadian agencies doing amazing and radical work in advocating for prisoners who are at risk of or who are HIV/AIDS, HCV positive, are the Prisoner’s HIV/AIDS Support Action Network (PASAN) and the Canadian HIV/AIDS Legal Network.

Some must read documents from them;

Clean Switch: The Case for Prison Needle Exchange in Canada – this 14 page document applies the Canadian Charter to prisoner rights to healthcare including harm reduction information and equipment.

Clean Switch 

A really important project the Legal Network took part in was the work done around including those most affected by drug use policy and criminalization – those who use the drugs.

Nothing About Us Without Us, Greater, Meaningful Involvement of People Who Use Illegal Drugs

 

Commemorating World AIDS Day 2011

For information on HIV/AIDS prevention, treatment and testing in Canada try these links:
One Life to Live 

AIDS Service Organizations 411 - Canada 

AIDS Committee of Toronto 

PASAN - AIDS Services for Criminalized People with HIV