The Battle of our Lives (Part 2 of 2)

If you missed part 1, click here

Fighting for our son’s life...

We knew that we couldn’t accept that answer of “no”. Our son’s life was on the line. The specialist agreed to meet with me along with our son. I expressed our shock that he was refusing to try other treatment options on our son, even though two other doctors felt that he needed something more.

When trying to explain his decision, the specialist drew a chart on the whiteboard outlining the treatment paths that people with my son’s illness were supposed to take in our province. What was most shocking about this treatment plan is that patients start out with the least effective treatment option and only move to the most effective when the other options fail to work.  Huh? It didn’t make any sense to us. Why wouldn’t you start patients out with the best treatment?  Why wouldn’t you want to give them the best chance to get better?

Let me be clear, the specialist did not say that the treatment path they offer goes from the least effective to the most effective. Far from it. He made it sound like a wonderful plan. He may have gotten me to fall for it early on when our son was first diagnosed, but since that time, I’ve done my homework. I’ve spent more time researching treatment options for this illness than you can ever imagine. It had become my part-time job. I know that what works for one person, will not work for another. Not for this illness or any other for that matter.  I also know which treatments continually have the highest success rates in studies, and it wasn’t the one that was given to our son.

After a lengthy discussion, the specialist was clear that he was not reversing the decision. Our son was to stay on the same treatment plan until it started working for him. It didn’t matter that our son’s health had gotten worse. It didn’t matter that he could die. It didn’t matter that our stress was going to continue. His treatment plan would continue unchanged and that was that.

Things continued to get worse...

I cried all the way home. How could they look me in the eyes and say that they weren’t going to do any more to help our son.  How could they look at our son and say he would have to keep following the same plan even though he was still suffering and he knew it wasn’t enough. How?

Our son was devastated that his treatment plan was not going to change, and he no longer had hope of ever getting better. He stopped his treatment altogether and went on a downward spiral to self-destruct.

We were forced to watch this take place with no power to change anything.  We were constantly waiting for bad news about our son. We had no faith in the very system that was supposed to help him.

Too little too late...

After another year of hell, our son was finally offered the chance to try another treatment option.  By this time, his illness had progressed to being as bad as it could get. We knew that what he was being offered now, although on the next level on the chart, was too little too late. His illness did not respond to the treatment and escalated quickly back to the previous level.

With broken hearts we’ve watched our son’s health decline causing him to miss out on everything that healthy young people his age were enjoying. He was a victim of a broken, underfunded system.

While our son continued on a downward spiral, I watched other patients get the best treatment without having to follow the “chart”. They got to skip the steps – even the ones whose illnesses were not as advanced as our son’s was. They were the lucky ones who won the treatment lottery.   

Unfortunately, some of the ones who didn’t win the lottery paid the ultimate price. I do not want this to be my son. I do not want this to be your child either.

By God’s grace, our son is still alive to fight another day.

Thankfully, the government now seems to be paying attention to this issue but talk is cheap. I don’t think anyone battling this illness – or their families – will get excited until we see action, meaningful action that will save lives.

Enough of that foolish chart and the lottery system. Being treated shouldn’t be a matter of luck. Every patient deserves an equal opportunity to get better. They deserve a treatment program that is right for them. 

It is hard enough to have a sick child. Families do not need the added stress of inadequate treatment when it is not necessary.  This is not an illness without treatment, but it is certainly one that goes untreated for many regardless of their age.

Glossary...

Illness = addiction

Specialist – addiction worker

Food for thought....

Did you feel differently about my son and our family when you learned that the illness was addiction? Unfortunately, many people, including some who work with addicted individuals, hold biases about addicts because they don’t understand the illness for the health issue that it is.  Because of this, we are left with a broken system that is not working. A system that is based on an old fashioned notion that looks at addiction as a moral issue, despite how that theory has been proven to be wrong time and again.

Individuals battling addiction deserve to have access to the most effective treatment just like anyone battling any health issue. Can you imagine a young person with diabetes having to go through all that my son went through before getting the proper treatment?  Would we ask them to start off with the least effective treatment and suffer for years before being offered something else? Would the parents of a youth with diabetes be denied the opportunity to discuss their child’s illness?   Would only a handful of youth with diabetes get the proper treatment while the others have to go through phases that are least effective? I think not!

I hope this article gives you pause and a chance to reflect on one of the biggest health and social issues facing Islanders today. While I couldn’t possibly cover our whole journey in one article, I wanted to give you a little taste of what it is like to love a child who is addicted here on PEI and elsewhere in North America.

The Battle of our Lives (Part 1 of 2)

The diagnosis

Our son had not been feeling well for a while. He wasn’t himself at all. He couldn’t focus in school and teachers were concerned.  We tried many times to talk to him but he had shut down. We kept on trying. We were worried. He is our oldest so this was our first experience with a teenager. We were hoping it was just a phase.

I talked to a few friends who had experience with raising teenagers and all seemed to agree that he was going through a normal rebellious teenage phase. Like so many others, he would outgrow it. It felt good to talk about it but I had a nagging feeling that this wasn’t “normal”.  That he had something going on inside that we couldn’t see.

We got a call from the principal at the school who told us that things are getting worse.  Our son was showing symptoms of something very concerning and they would like to talk to us.

We were filled with worry as we headed to the school to discuss our son.  After a lengthy discussion, we all agreed that he likely had health issues that needed to be addressed as soon as possible.

We made the appointment to see the appropriate specialist and our suspicions were confirmed. Our son had a life threatening illness that kills more people every year than car accidents. We were absolutely devastated. Our beautiful boy was sick and we could lose him. God help us!

We were scared, sad, and desperate for answers. We wanted to meet with the specialist privately so we could find out more about our son’s condition and what we needed to do. He told us that he could not tell us anything because that would be violating our son’s right to privacy. Going forward, he would be speaking to our son only when it came to his illness.

Our teenage son could die and we were being left in the dark. We were not to be part of his treatment plan. We would not be told if he was responding to it or not. We would not get answers. We were left on our own, in total shock and disbelief that this was happening to us. Many tears of worry and frustration were shed and many more would follow.

Not responding to treatment ...

Over the next couple of years, our son’s health had gotten worse. He lost a lot of weight. He couldn’t work and do things that normal people his age were doing.  He had to give up his music. He had been too sick to finish high school.  He was only a shell of his former self.

It was clear the treatment plan was not working for him. He needed something else. As for us, we were mentally, emotionally, spiritually, and physically exhausted. Living with the fact that your child could die of his illness at any time is exhausting and terrifying. It was made even more so when we were kept in the dark about his treatment. We had no say, even though we are the ones who would hurt the most if our child didn’t make it. God, please let our son make it.

Two doctors agree that he needs more...

Two doctors, who had been treating our son for various health conditions, felt that he needed more intensive treatment for his illness if he was to get better.  They both wrote referrals, which were sent to the specialists who had been treating him.

For the first time in a very long time, we saw a glimmer of hope in our son’s eyes. He felt that he might finally get the help that he needed. He might have a chance at a normal life.  He was tired of suffering. Oh how beautiful it was to see a smile on his face again. To hear him planning for the future.

We were hopeful as well. We waited a long time for this.

Request DENIED...

We waited for more than a month for a response from the specialist. In the end, he DENIED the request for different treatment. He wanted our son to keep on the same treatment plan, even though he wasn’t responding to it and his health was continually declining. It was his hope that one day our son would begin responding to the treatment.

Our son was devastated and completely out of hope.

We were shocked and angry. I cried. I screamed. I prayed.  

Our fight to save our son's life continues in Part 2: Click here

Time for Action on Addictions

Printed in the Guardian on September 7, 2013 

TIME FOR ACTION ON ADDICTIONS 

Editor:

It’s been four long months since Health Minister Doug Currie suggested he was going to move aggressively on the problem of youth opiate addiction in P.E.I. (“Currie commits to move aggressively on youth addiction”, the Guardian, May 8, 2013). At the time, he said, “We need to look at a longer-term program for youth and adults struggling with addictions in this province. I clearly see that from talking to (those on) the front lines, from talking to families.”

Finally, our cries were being heard! Unfortunately, this glorious announcement was followed by a summer of silence. During the month of July, it was reported that P.E.I.’s needle exchange use is up 60 per cent, rates of Hepatitis C on P.E.I. have doubled over the last decade, and that our crime rate is up for the second year in a row. It comes as no surprise that drug addiction is behind these startling statistics. The time for action is now. 

There are many Islanders, myself included, who are very concerned about what is happening in our province. It is time for our government to take immediate and meaningful action on the issue of addiction, and to bring the public up-to-date on what steps have been taken since the spring. 

Rose Barbour,
Charlottetown

The Truth About Methadone

 

This is a commentary that I wrote for today's (August 31) Guardian newspaper. Education is an important part of changing minds and bringing about change for the greater good. I am so grateful to the Guardian for continuing to print my addiction-related commentaries. Thank you!


The truth about methadone

Guest commentary

By Rose Barbour

How sad it was to read the story of a young man named Adam who is being harassed at his place of employment because of the medical treatment that he is receiving under a doctor’s care (Methadone patient faces discrimination, The Guardian, August 17, 2013).

In the article, Dr. Don Ling, medical director for the methadone program in P.E.I., mentions that their clients also face negative reactions within the health care system. Considering that the Island is in the midst of a prescription drug (opioid) epidemic, I find all of this very disheartening, but not surprising. How will we ever get this problem under control if we balk at the treatment options that are available?

I believe these types of reactions come from a lack of understanding about methadone. To help shed some light, I have looked to the Centre for Addiction and Mental Health (CAMH), Canada's largest mental health and addiction teaching hospital, as well as one of the world's leading research centres in the area of addiction and mental health, for information.

CAMH considers methadone to be one of the most effective treatments currently available for opioid addiction. As a long-acting opioid medication, methadone prevents withdrawal and reduces or eliminates drug cravings. When individuals are freed from the constant drug seeking caused by withdrawals and cravings, and the subsequent dangers around finding and using drugs (i.e. death, disease, crime), we all benefit.

Methadone is medically safe when prescribed and monitored by a doctor. With proper doses, clients feel normal, not high. As part of a methadone program, individuals also receive the medical and social support they need to stabilize and improve their lives.

With the positive benefits of methadone, we should support not condemn those who find recovery with it. One of the problems is that there are many myths about methadone that keep it stigmatized, the most prevalent and damaging is the myth that people on methadone are still addicts, even if they don’t use any other drugs.

CAMH clarifies that people who take methadone as a treatment for opioid dependence are no more addicts than are people who take insulin as a treatment for diabetes. Methadone is a medication that allows one to live a normal life, work, go to school, or care for their children.

As with other medications, methadone also comes with risks. When not used properly, or when mixed with other substances, methadone can be deadly. Some people also sell their methadone, which can end up in the hands of our loved ones. While these risks are very scary, we have to remember that other prescription medications come with similar risks. We need to trust that doctors will properly monitor their clients and adjust their treatment plans as necessary to minimize any potential risks.

Many people firmly believe and some are very vocal that abstinence-based programs like NA are the only way to overcome addiction. We cannot rely on beliefs when it comes to treatment. With a prescription drug epidemic, the stakes are too high. This belief also causes stigma for Methadone clients who are on a different path to recovery.

There is more than one way to recovery. Many people have found the motivation they needed in NA (or other 12-step groups). Many have not. Many have found their motivation in methadone programs. Many have not. This is because what works to motivate one person will not work for another. People are very complex. We each have different needs and respond to different things.

One size does not fit all in addiction treatment. We should embrace every option available so that people like Adam will have the best chance to find recovery and live a normal life. Overcoming addiction is very hard. For many individuals, death was the only way out of it. This doesn’t have to be (at least not without providing every opportunity to recover). With the proper support and resources in place, and by showing compassion toward those who are battling addiction, we can make a difference.

I can be reached at behindtheaddiction@gmail.com or on my blog at shadowsinpei.blogspot.ca.

- Rose Barbour of Charlottetown has researched addiction, maintains a blog, participates in drug awareness programs and has spoken publicly on the subject of addiction.


Here is the link to the article:  http://www.theguardian.pe.ca/Opinion/Letter-to-editor/2013-08-31/article-3370257/The-truth-about-methadone/1

Let's turn this thing around!

 

We have a serious drug problem on this Island! As a province, we should be doing everything we can to combat addiction, including expanding our treatment options to incorporate modern, scientifically proven approaches along with the traditional ones. I’ve had enough of individuals, families, and communities being devastated by this disease – a disease that is treatable. How about you?

So, why aren’t we adequately treating it? Good question!

The biggest barrier is funding. The Province needs to step up and make the investment in addiction treatment. Research suggests that for every $1 spent on treatment, $12 is saved in other areas including health and justice. That sounds like a good investment to me. Any investor would put money into something that would yield a 12:1 return. Why won’t our government?

To be fair, our government has made some investment in treatment programs, albeit small. Some of the programs already in place work for some people, which is wonderful! I am always so pleased to hear about a success story. However, they are few and far between because what is being offered to the majority of individuals seeking help is not enough OR there are long waiting lists so Islanders cannot access the services in a timely manner (timing is everything with addiction treatment). Overall, and for many reasons, we are failing. Our increase in IV drug use, the increase in cases of Hep-C from IV drug use, as well as having the highest crime rate per capita in Eastern Canada are all good indicators of this failure. Please see my previous post for more information on these increases.

It is heartbreaking to see so many people, especially our youth, caught up in addiction. It is heartbreaking to hear of so many young people contracting Hepatitis-C, and it is heartbreaking to see an increase in crime in our communities. It is not too late to turn things around but we have to put the pressure on government in order for them to act on this epidemic. Call your MLA and talk about it. You have to CARE enough to do something.

If you don’t give a darn about addicts, perhaps you care about your community and sense of safety. Maybe that will be your motivation to do something. You may be one of those people who say “throw them in jail for a long time” thinking that is the solution. Well, it isn’t. Locking someone up with no treatment for their addiction is not solving the problem. They will get out eventually and still have all the same issues only worse because they are further hindered by a criminal record.

As a responsible citizen, I do believe that if you do the crime, you do the time. We can’t have people committing crimes with no consequences. However, there needs to be treatment offered as part of the rehabilitation process. The more logical approach to crime is to have treatment available BEFORE a crime even takes place. Less crime means fewer victims. That would be nice!

We never know what the future holds. You may not be directly impacted by addiction today but you could be down the road with a child, grandchild, niece, nephew, etc. becoming addicted. Addiction knows no boundaries. Let me tell you, when/if it does happen to your loved one, you’ll wish that you did something earlier to ensure the necessary help would be there. There is no scarier feeling than having your loved one sick with something that could easily kill them. As if that isn’t bad enough, finding out that there is not enough help available and that we have a system full of gaps is downright devastating.

As a province, we need to expand our offerings and our resources so that we can find something that works for each person. Because we are all unique individuals, whether you have an addiction or not, one size does not fit all with anything in this world and that includes addiction treatment.

Let’s take a stand for our fellow Islanders and for ourselves as well as future generations by demanding more of our government in this area. This is a disease that is treatable. That is the positive part. We can turn this thing around with a little investment of money and compassion.

Sincerely,

Rose

My heart sang with joy....and then there was silence.

Three months ago, I read the following headline in The Guardian, which made my heart sing with joy. 

My family and many others have waited years for this to happen. And, they weren’t just regular years either. They were filled with stress, worry, devastation, disappointment, shock, tears, and sadness. After reading the article, I felt that change was finally going to happen here on PEI. It felt good to hear something positive on this subject. It felt good to know the government was paying attention. It felt good to know that people were going to be helped to break free from the grips of addiction. FINALLY!

In the three months since that article appeared, it was reported that:

1.       PEI’s needle exchange use is up 60%. While it is positive that IV users have a place to get clean needles and return used ones in order to prevent the spread of infections and diseases, this significant increase is indicative of the overall increase in IV drug use, especially among our younger demographic (see #2). 

2.       Rates of HepatitisC on PEI have doubled over the last decade, which is also tied into the increase in IV drug use. As if that wasn’t bad enough, of the 50 new cases per year, at least 50% of the individuals are between 20 to 30 years of age (compare that to only 10% in that age group 15 years ago).  Important note: 5 of the 50 cases were not related to IV drug use. 

3.       Our crime rate is up for the second year in a row. This includes only police reported crime. Many more crimes go unreported. We had the highest crime rate per capita for provinces east of Manitoba. It is estimated 80% or more of the inmates in Sleepy Hollow are there because of their drug addiction. One only has to read the newspaper to see addiction mentioned as a mitigating factor in most cases before the court. For this reason, we can easily conclude that addiction is behind the increase in crime here on our gentle Island.

With all this bad news related to addiction, you would expect our government to be on top of it. Yet, there has been nothing but silence since the article in May that promised aggressive action. Why? Also, why has the review on Mental Health and Addictions not been released yet?

According to the article mentioned earlier in this post, “Currie said government will be ‘moving fairly aggressively’ to find longer-term solutions to the complex problems associated with youth addictions.”  I guess that Currie’s idea of “aggressively” is different from mine.  When lives are on the line, aggressively should mean right now – not when summer is over (or even later)!

To be fair, I don’t put this problem squarely on the shoulders of Health Minister, Doug Currie. He is one man with a huge portfolio to take care of. The Departments of Health, Education, and Justice all played a role in this problem reaching epidemic levels, and they all need to play a role in fixing it. We cannot forget about the Premier either! As the head of this province, Premier Ghiz is ultimately responsible for what happens here. Premier Ghiz, we cannot afford to wait any longer on this issue. 

It is positive that the government is holding committee hearings in the fall but we need to take action now. You already know the extent of the problem. The evidence is all around you. 

As a parent, citizen, and compassionate human being, I respectfully ask our government to take meaningful action on the issue of addiction before it is too late to turn it around. 

Sincerely,

Rose