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AHDA Qld Inc

Newsletter Jul 2003

In This Issue

President's Message

Dear Friends,

Twenty years ago scientists isolated the gene that causes Huntington's Disease and ten years later the actual gene was found. Over these two decades there has been considerable research activity and we all live in hope of not only the ability to delay the onset but also to find a cure. A further clinical trial is beginning in the United States by the firm GenoMed Inc. with ACE inhibitors and will cover not only HD but also Alzheimer's Disease, Parkinson's Disease and ALS (Lou Gehrig's Disease).

The recommendations of the long awaited enquiry into Genetics in Australia have now been released. The Association has a copy of these recommendations in our Library or for those with Internet access they can be found at https://www.alrc.gov.au/

We are sorry to have to inform our readers that the Bundaberg Support Group is to be disbanded. This Group has been supporting clients, their families and other support people such as Nursing Home staff and community based workers over a period of 7 years.

Due to the degenerative nature of HD, we are aware that community needs can change over time and this is what has taken place in Bundaberg. The clients who were being supported in the community, both socially and otherwise, have either relocated from the area, moved into supported residential care or have passed away, and at present we do not have a demand for the support previously required.

I would like to acknowledge the voluntary work which Nancy Swanson has undertaken during the entire time the Support Group has been functioning. Nancy has been ably supported by a small group of people, in particular Jenny English and Fran Cassidy who have carried out secretarial and treasury roles. I extend the thanks of the Bundaberg HD community and the Queensland HD Association to Nancy and her supporters. Without this valuable contribution community awareness of HD in the Bundaberg area would not have reached the level which currently exists. Nancy your efforts are greatly appreciated and we wish you health and happiness in the years ahead.

A Membership renewal form is enclosed with the Newsletter. I encourage you to renew your membership at your earliest convenience.

Gerry Doyle, President

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FROM THE WELFARE STAFF

It was indicated in our March 2003 Newsletter that I would be representing the Queensland HD Association at the International HD Conference being held in Toronto in August this year.

Since that time world events such as SARS has changed my thinking and I have decided not to attend the Conference. While the lost opportunity to network is disappointing, I know that Queensland families will not be disadvantaged in the long term as any exciting research or relevant information will be forwarded via the Internet.

The other issue I would like to address is the challenge facing families and Welfare Staff in finding suitable affordable Low and High Level Residential Care for persons affected by HD, who are no longer able to be cared for in the community or by family members.

I have been working as the Welfare Coordinator in Queensland for 17 years and in that period of time I have never known the residential care situation to be so difficult.

I would urge families to discuss caring options for people in mid to late stages of HD. The people who can assist in this area include the Aged Care Assessment Team, the Family Doctor, representatives from service providers such as Blue Care, St. Luke's and Community Health, and of course the Welfare Staff at the HD Office.

I believe it is in everyone's best interest to also be fully informed about community based services such as Community Aged Care Packages, Respite, both residential and Day Care, Meals on Wheels and any Centrelink benefits that may be available.

If you have any questions or are interested in knowing more about these issues, please contact us at our Annerley office.

We continue to work toward the establishment of suitable HD specific accommodation in Queensland. In doing so, we have returned to the drawing board to analyze the current and perceived future needs of our HD clients. This is an in depth process. We have been surprised at some of our findings and this reaffirms the need for further and continued research, so that when we again approach the Queensland Government for funding, we will be fully aware of the overall needs of people affected by HD in Queensland. Kind regards,

Gwen Pratten

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RESEARCH

Science and Research Forum - November 2002
By Shawn Mitchell, Director of Communications and Volunteer Development

The Huntington Society's Annual Conference in Niagara Falls was fortunate to have presentations from three Huntington Disease researchers: Dr. Eileen Devovan-Wright, Dr. Ray Truant, and Dr. Marcy MacDonald. Included below are summaries of their speeches.

Dr. Denovan-Wright provided an excellent overview of the Society's research program, including the key factors in its ongoing success. She highlighted the membership of the Society's Research Council, which is strategically composed of not only leading researchers in Canada, but also from abroad (such as Dr. Gillian Bates at Guy's Hospital, London, England) and the private sector (Dr. Sophie Roy, Merck Frosst Centre for Therapeutic Research).

Of particular interest to the audience were Dr. Denovan-Wrights's comments about how the Society grants money to research. There were two strengths to the NAVIGATOR program that she highlighted. The first was how the Society funds both basic and clinical research, the all-important balance between "lab bench and bedside".

The second point she made related to how the Society's research dollars are split amongst multiple researchers and labs. "In the long run, it makes more sense to spend smaller amounts of money on a number of research brains than to spend lots of money on just one to two research brains." She pointed out that there are numerous examples of how the Society has been able to support and sustain the research efforts of scientists with small amounts of money. One of the best things that the Society is able to do is provide money that allows researchers, who are trying to keep their labs active in between the arrival of larger grants from funders like the Canadian Institutes for Health Research (CIHR), to continue ongoing research without having to shut down until larger grants actually arrive.

According to Dr. Denovan-Wright, solving the puzzle of Huntington disease is an international problem, and one in which the Huntington Society of Canada is currently playing a key role.

Using a LCD projector connected to his laptop computer, Dr. Truant "wowed" the audience with timelapsed video images of toxic protein aggregates actually forming in a brain cell, and then killing it.

Dr. Truant is trying to understand how and why the toxic protein huntingtin (created by the mutant gene that causes Huntington disease) enters the nucleus of brain cells, and to find out what effect, if any, preventing huntingtin from entering the nucleus of a brain cell has on the process of cell death in Huntington disease. Using two very sophisticated microscopes (one worth roughly $400,000; the other $250,000), Dr. Truant has been able to observe the mutant huntingtin at work in live neurons (brain cells). His work is tremendously important in understanding how the mutant huntingtin functions and interacts with other proteins in brain cells.

Dr. Truant also took the time to acknowledge the importance of funding support such as the NAVIGATOR Coalition grant he received from the Huntington Society of Canada. "Labs like mine can't function without the support of organizations like the Huntington Society."

The keynote speaker for the research forum was Dr. Marcy MacDonald, who started her presentation by recalling her first meeting with the Society's founder, Ralph Walker. "Ralph Walker actually recruited me. I met Ralph at a meeting, and he said, 'You don't sound like an American,' and I said, 'Well that's because I am not an American, I'm from Northern Ontario&I was born in Larder Lake.' And so he said, 'I'll tell you what, you can stay in the U.S. but you have to work with us.' And I said, 'Ralph, whatever you want!' "

Dr. MacDonald talked about the search for a cure for Huntington disease being a cycle that can be broken down into four parts:

· The first part of the cycle is developing a good description of the disease that can guide research;
· The second part of the cycle is identifying the genetic cause of the disease so that researchers can know what the real problem is;
· The third step in the cycle is to describe and understand how the mutant huntingtin protein actually leads to the death of brain cells in patients with HD; and the last phase of the cycle is actually developing something that makes a difference in the lives of people who have HD.

Today, research is on the third cycle, leading into the fourth. As she talked about each part of the cycle, Dr. MacDonald talked about what we already know about Huntington disease, and highlighted what researchers don't know but are working hard to figure out. But there were a couple of key points that she made that the Huntington's community in Canada should make note of.

CAG expansion and age of onset

"For any given individual, it's very difficult to accurately predict exactly when onset will happen. And this is for a very important, very hopeful reason." If one CAG repeat length can result in a twenty-year range for onset of symptoms to occur, there must be other factors that have a bearing on when symptoms will start. In Dr. MacDonald's opinion, "That means that there are genes and there are drugs and there are environmental things that are going to be able to go into the equation and have a say in when the disease will start. That's very helpful & good genes versus bad genes, healthy lifestyle versus unhealthy lifestyle, or just plain good luck versus bad luck & this tells us we are going to be able to modify age onset."

What does this mean?

Dr. MacDonald is saying that there are a lot more factors than just CAG repeat length that determine when onset of symptoms will occur. Some of these factors are environment - eating well, exercising, minimizing stress, trying to stay involved in things around you. Each of these could be a way of delaying onset of symptoms.

We don't need to do big things to produce big results

Dr. MacDonald pointed out that the difference in a mutant gene that produces toxic Huntington and the normal gene is incredibly small. She added, "That's a pretty subtle difference, and the fact that it's very subtle means if we could figure out how exactly the new mutant protein is working we'd have a pretty good shot at shifting what it's doing. Because what it's doing is not dramatic."

In Dr. MacDonald's favoured scenario, the key is to discover the first thing that mutant huntingtin does in the cell that sets off the chain reaction of all the other bad things that lead to the death of the brain cell. "It means that if we can interfere with the mutant huntingtin protein and the first thing that it triggers in the cell, we have a chance at stopping things before there are a lot of downstream consequences to have to deal with."

People with HD can be helping themselves now.

"Environment enrichment is when you take an HD mouse model - and these are very, very sick animals - and you give them stuff to play with in their cages. You give them toilet paper rolls, pieces of plastic and little wheels and stuff to kick around - things to make their lives more interesting - and it increases their survival the same as mice on minocycline, the same as creatine, the same as other drug treatments. I think that is a powerful message & it means that having a good day might make the difference."

What does this mean?

Research has shown that mice with HD who are encouraged to live well - eat well, sleep well, exercise, etc. - live longer than mice with HD who don't do these things. In fact, according to Dr. MacDonald, the positive impact of these activities is at least as effective in slowing progression as mice with HD who are given creatine or minocycline.

Treatment will be a reality

"I want to leave you with a thought that Eileen and Ray also left with you, which is that things have moved lots faster than any of us can possibly believe, and we have generated things that say it's absolutely possible to defeat this disease."

Acknowledgement: The Huntington Society of Canada - Web Site https://www.huntingtonsociety.ca/

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Encouraging Preliminary Results about LAX 101

By Shawn Mitchell, Director of Communications and Volunteer Development, Huntington Society of Canada, (with source information from Amarin Corporation plc and the Web site for the Huntington study Group at huntingtonstudygroup.org

In October 2002, Amarin Corporation, the company responsible for the development of LAX 101, produced a public disclosure of the preliminary results of a Phase III study of LAX 101, an experimental drug being developed for treating patients with Huntington disease (HD).

What is a Phase III study?

In a Phase III study, an experimental drug is tested in a hundred to several thousand patients with the disease/condition of interest. The large-scale testing provides the pharmaceutical company as well as the U.S. Food and Drug Administration (FDA) with a more thorough understanding of the drug's effectiveness, benefits/risks, and range/severity of possible negative side effects. Most Phase III studies are randomized, and Phase III studies typically last several years. Seventy to 90 percent of drugs that enter Phase III studies successfully complete this phase of testing.

The Amarin press release announced the preliminary results on a multi-centre, double-blind, randomized, placebo-controlled study of LAX 101, which enrolled 135 patients with HD at six sites located in the United States, Canada, U.K. and Australia. Drs. Blair Leavitt and Michael Hayden, who are both NAVIGATOR Coalition investigators, were responsible for the LAX 101 trial that was run in Vancouver, BC.

In general, these results are also consistent with findings in Phase II studies previously reported in January 2002.

What is a multi-centre, double-blind, randomized, placebo-controlled study?

First, multi-centre means that the trial was conducted in more than one place. In this instance, the drug was tested on patients in six different locations.

Second, double-blind, randomized, placebo-controlled means that one group of patients receives the experimental drug, while a second or control group receives a placebo (often a pill that contains sugar or just water). Whether a patient receives the drug or the placebo is decided by random chance (as if by the flip of a coin). Lastly, double-blind means that no one (the patient or the researcher studying the patient) actually knows who is getting the experimental drug or the placebo.

The primary end-point in the first trial was the change over a one-year period in the Total Motor Score 4 (TMS-4) subscale of the Unified Huntington's Disease Rating Scale (UHDRS), the standard rating scale for trials in HD. While trends favoured LAX 101 over placebo, statistical significance was not reached when measured in the intent-to-treat population (all patients entering the study, including those who dropped out or did not comply with the protocol). Significant results were achieved in the subset of patients evaluated (those completing the study in compliance with protocol requirements). The study also produced trends in favour of LAX-101 in several secondary endpoints.

What is a UHDRS score?

UHDRS stands for Unified Huntington's Disease Rating Scale. The UHDRS is a research tool that has been developed by the Huntington Study Group (HSG). The purpose of the scale is to allow the researchers to grade the symptoms of HD in a way that allows them to make accurate comparisons between individual patients, and to better chart the course of the disease in patients. The scale is divided into a number of different subscales, including the Total Motor Score 4 (TMS-4).

What is the point of the UHDRS score in a drug trial?

In a study like this one, each patient will start the drug trial with a set of UHDRS scores that puts their symptoms into a number form. Then, during the course of the drug trial, all the study participants will be periodically re-evaluated to see if their UHDRS scores have changed. Researchers know that the UHDRS scores of patients with HD will change over time as their symptoms change.

The primary end-points (the most important thing where you hope/expect to see some amount of change) of the LAX-101 trail are a change over a one year period in the Total Motor Score 4 (TMS-4 sub-scale of the UHDRS.

The pre-determined and end-points of the trial (such as UHDRS scores) are compared for the patients on drugs and the patients on placebos. If there are significant differences between the scores then it's possible that the drug can be said to have had some kind of impact on Huntington disease.

LAX-101 was found to be well tolerated by patients throughout the trial. The incidence and types of adverse reactions that occurred were similar in the placebo and drug groups.

After meetings with representatives from the Food and Drug Administration (FDA), Amarin Corporation plc and Laxdale Ltd announced on February 3, 2003 their intention to conduct an additional Phase III study for LAX-101. Rick Stewart, CEO of Amarin Corporation, stated, "The decision to conduct a second Phase III study is consistent with the approval process of new drug products for neurological disease, and reflects the fact that statistical significance was not achieved in the intent to treat patient population in the first Phase III study. We were encouraged by the results of our previously announced Phase III trial, and look forward to finalizing our protocol with the FDA for our second Phase III trial."

Amarin Corporation plc is a specialty pharmaceutical company focused on neurology and pain management. The company plans to become a leader in these therapeutic categories by providing innovative products and solutions that address significant unmet medical needs.

Acknowledgement: "Horizon", Huntington Society of Canada, No. 108, Spring 2003.
Reprinted: "Gateway", AHDA (NSW) Inc. Volume 6 No 2, March/April 2003.

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PREDICT-HD
Comes to Australia

The PREDICT-HD study is about to start in Australia - in Sydney and possibly other states.

PREDICT-HD (Neurobiological PREDICTors of Huntington's Disease) is a study developed by the Huntington Study Group (HSG) under the direction of Jane Paulsen PhD, Professor of Psychiatry, Neurology and Neurosciences at the University of Iowa College Medicine, USA.

In September 2001 the HSG received funding from the National Institutes of Health (USA) to conduct the PREDICT-HD study which will cover centres in the USA, Canada and Australia.

Many of you will remember Jane as the keynote speaker at the International Huntington Association Meeting in Sydney in 1997. In fact her presentation inspired the name for our newsletter, "Gateway" - Jane likened the functions of the brain to a gate. And of course, her booklet "Understanding Behaviour in Huntington Disease" is an excellent resource for both family carers and health professionals.

We have recently been advised that Westmead Hospital has ethics approval to commence a clinical study of the PREDICT-HD study.

Dr. Elizabeth McCusker, Director, NSW Huntington Disease Service, will head the PREDICT-HD team at Westmead Hospital as Principal Investigator. The PREDICT-HD staff members include:

Dr Bernadette Bibb - Clinical Neurophychologist, Westmead Hospital

Catherine Lawson - Intern Neuropsychologist, Westmead Hospital

Dr Lavier Gomes - Neuroradiologist, Westmead Hospital

Dr David Ho -- Radiologist, Westmead Hospital

Professor Ron Trent - Head, Department Molecular & Clinical Genetics, Sydney University

Jane Griffith - Clinical Nurse Specialist and Study Coordinator, Westmead Hospital

PREDICT-HD is a collaborative research effort by approximately 20 HSG centers to study persons at risk for HD who are aware of their gene status. People who have tested gene positive and gene negative will be included in the study. It is an observational study. This means that research participants in this study, will be examined periodically, but will receive no experimental drugs or treatments. It is a study that is expected to give essential information to help design future studies of experimental drugs aimed at slowing or postponing the onset of HD in healthy persons at risk for developing HD.

The study will use a variety of tests to examine the nature and pattern of neurobiological changes and neurobehavioral changes that occur in the period leading up to a diagnosis of HD. The intent of the study is to learn more about the beginning changes in thinking skills, emotional regulation, brain structure and brain function as a person begins the transition from health to HD.

The team at Westmead Hospital is currently seeking men and women to participate in the trial.

The essential requirements for participants are:

  • Must be 26 years of age and older
  • Must have completed predictive testing
  • May or may not carry the gene for Huntington's Disease
  • Do not have a diagnosis of Huntington's Disease

For more information please contact Jane Griffith at Westmead Hospital
Tel: (02) 9845 6793 or
Tel: (02) 9845 5555 Pager No: 01826

For more information about the Huntington Study Group visit the website at:
huntingtonstudygroup.org

Acknowledgement: "Gateway", AHDA (NSW), Volume 6 No 2, March/April 2003

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BRISMEN
Carer Support Group

Queensland Council of Carers
Meeting for the Men's Carer Support Group

A discussion group for men who care for a partner, family member or neighbour who are frail aged, chronically or terminally ill, has a disability or mental illness.

Come along and share your experiences over morning tea. Remember there are others who may be in the same situation! We also have guest speakers on different topics.

When: The first Thursday of each month.
Time: 10am - 12pm

Where: Queensland Council of Carers
15 Abbott Street
CAMP HILL

Please contact Mirtha or Nicole if you need more information on 3843 5444.

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MORE EMOTIONAL SUPPORT FOR CARERS

By Adam McLean, Counselling Coordinator, Carers NSW

Caring and Emotional Communication

Relationships undergo challenges and change throughout their lifetime. Emotions play an important role in communication within the relationship. They can indicate how well the other person is meeting your needs and expectations. Emotions can bring people together, they provide information about one another and they can provide a bond between one another. They let each other know what is going well and what is not going well.

"Sometimes as a carer, it's difficult to understand that the emotional signals of the person you care for, that you once knew and understood, have changed, maybe even disappeared."

Sometimes as a carer, it's difficult to understand that the emotional signals of the person you care for, that you once knew and understood, have changed, maybe even disappeared. Depending on the nature and severity of the illness or disability, carers and family members face continual challenges that can be frustrating and confusing. There can also be the realization that the relationship that once was, is no longer, or never will be, the same. Of course there are carers whose relationship was difficult to begin with, who find that there is increased difficulty and complication as they care for the person.

In dealing with the changing relationship and communication difficulties, emotional reactions, that once were accommodated and understood by one another, no longer exist. Emotional responses that once made each partner feel good about one another and provided a sense of safety, love, joy or happiness can deteriorate as the illness or disability progresses.

In relationships where there is no illness and disability, couples can see behaviours and patterns within the relationship developing that can be counterproductive or destructive to the relationship. With help these behaviours and patterns can be explored, discussed and addressed. Where communication is impaired, however, this process is more difficult and painful. An example of this is when a person who is caring for someone with a mental disorder has to negotiate a series of adjustments in order to reach a new equilibrium and understanding. This may include coming to terms with the loss of the person they once knew, followed by an acceptance of the new person that has emerged and an adjustment to that new person in order to negotiate the new relationship (Jones 2002).

This process is fraught with uncertainty and loss. Most relationships are not static; they are continually changing and evolving at different levels and speeds. When an illness or disability is involved, there is a loss control. The once familiar emotional responses have changed, distorted or disappeared altogether and the new, confusing ones can be difficult to understand and work through. This change can be a one-way process that leaves the carer with an overwhelming sense of confusion, grief and isolation. But, it's not all negative. Many carers have found that there is great reward and challenge in meeting the change and a good sense of humour does help.

Exploring and learning about your feelings can help you to understand your emotional response in your caring role. That way you can validate and develop an awareness of your response. Talking it over with a cousellor or attending a support group or seminars can help increase your awareness. In doing so, you can learn to regain control of your changing relationship, be knowledgeable about your personal resources and reduce your sense of isolation.

Family and friends may withdraw their support as they struggle with their own sense of fear or embarrassment. Often you have to be the one to show them how to deal with the change. If you need to talk your situation over, why not call the Commonwealth Carer Resource Centre at Carers NSW on 1800 242 636 and speak with one of our Carer Support Officers. Together you can discuss your situation, learn to understand carer issues and the impact that caring can have on you. If you are interested in speaking with a counselor or participating in our Talk-Link Program then call us today. Talking about your emotional responses can lead to change and an improved relationship with the person you care for.

Reference:
Jones DW, 2002 Myths Madness and the Family. Palgrave NY.
Shield L, ARAFMI WA Supporting Carers: A Mental Illness Prevention Priority.
Source: www.arafmi.asn.au

Acknowledgement: "Carers News", the newsletter of Carers NSW Inc March 2003.
Reprinted: "Gateway", AHDA (NSW) Inc., Volume 6 No 2, March/April 2003

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CARERS TRAVEL FREE

People with a disability who are unable to travel alone can now apply for the Travel Companion Card - allowing their escort or carer to travel free on all Brisbane Citytrain services.

When using the card, a person with a disability purchases their train ticket as usual and shows the Travel Companion Card to allow their carer to travel free.

For a person with a disability to get a Travel Companion card, they need to fill out an application form and have their doctor complete a form verifying they cannot travel alone by train.

For more information or for an application form, contact John Olsen at Queensland Rail on 3235 3526 or write to GPO Box 1429, Brisbane, 4001.

A $5 annual fee applies for each care issued.

Acknowledgement: "Disability Views", Issue 11 - May 2003, Disability Services Queensland.

QANTAS CARER CONCESSION CARD

The QANTAS Carer Concession Card is issued to people with a disability and high-level support needs who require the full time assistance of a carer whilst they are on the plane.

The persons are eligible if they need to have one to one support when seated on the plane for tasks such as feeding, transferring to the bathroom, communicating with the flight staff etc.

Persons would not be eligible if they only need assistance boarding the plane, or when they arrive at their destination.

Cardholders receive 50% discount on the standard full price domestic air travel, in addition to 50% off their carers fare. Please note that the Carer Concession Card does not apply to already discounted fares or 21 days in advance fares. The card will not reduce a child's fare any further but will reduce their adult carers fare by 50%.

This card is a photo ID card which is valid for three years and has an administration fee of $27.50 including GST.

For further information and an application form contact NICAN on:
Phone: 1800 806 769 Fax: (02) 6285 3714.

Acknowledgement: The Association of Genetic Support of Australasia Inc. Newsletter April-June 2003, Issues 64-65


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A Smart way to Manage Regular Bills:
Centrepay

Getting out of the home to do everyday things, like paying bills, can be daunting for some Centrelink customers who have, or who care for someone who has an illness, injury or disability.

That's why Centrepay is a great option for customers. Not only does it remove the need to leave the home to pay bills, it also saves customers time that can be spent on life's pleasures, like reading a book.

Centrepay is a free and voluntary bill paying option for Centrelink customers. Customers can choose to pay some of their household bills, like rent and electricity, with regular, manageable deductions direct from their Centrelink payment. This makes paying for any outstanding balance easier when the bill is received.

Many customers have taken advantage of Centrepay, like Peter Citizen.*

Peter felt that things were looking pretty grim for him earlier this year. Peter receives a Disability Support Pension, and his electricity bill had got away from him in a way that only bills can. Not knowing what else to do Peter rang his electricity provider and requested that his electricity supply be disconnected.

At this stage, rather than carry out Peter's request which would have left him in a real predicament, the customer service officer rang a social worker at Centrelink and asked if they could call to discuss how Centrepay could help Peter. The social worker called later that same day and explained how, through Centrepay, Peter could deduct a set amount of money from his fortnightly payment towards paying his bills.

Peter signed up right away, extremely grateful that he wasn't going to get into deeper trouble. A win-win situation all around and a great example of community partnerships improving life for their customers.

Centrepay could work for you too.

Centrepay is available as a payment option for rent, electricity, water, gas, home care, ambulance, whitegoods, child care fees, education fees, court fines, funeral benefits and more.

Call Centrelink on 13 2717 or visit your local Centrelink office to find out which service providers are registered and then fill out the Centrepay Deduction form to set up payment of your bills.

*Names have been changed to protect the identity of Centrelink customers.

Acknowledgement: "Disability & Carer Connections", Issue 10, Centrelink, January 2003.
Reprinted: "Gateway", AHDA (NSW) Inc., Volume 6 No 2, March/April, 2003.

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WHAT TO DO WITH UNWANTED MEDICINES

How do you store medicines in your home? Do you keep medicines you no longer want or need? If so, have some of them passed their expiry date? How do you dispose of your unwanted medicines? Are these important wise use of medicines issues?

Where are medicines kept?
A recent Melbourne-based pilot (preliminary) survey looked at how and where people stored medicines in their homes and how they disposed of them.

Medicines like risperidone were stored in various places around the home: in the kitchen, bathroom, bedroom, laundry, lounge, and even the toilet - and often in more than one place in the same house. In some cases, they were kept in a secluded place: in a shoe box, drawer or shelf. In others, they were kept in the open or with food, drinks, cleaning products, toiletries, veterinary products, laundry detergents and so on. Some of the medicines had missing or unclear labels.


The main issue is safety


Some of the participants were embarrassed to find long expired medicines in their homes. They found half empty bottles with almost unreadable labels, blisters with unrecognizable brand names, and loose tablets wrapped in foil. 'What's all this stuff!', one woman exclaimed. 'Do you mind if I get rid of this junk right now?' Laughing, she started throwing the tablets and capsules into the rubbish bin and pouring the liquid medicines into the kitchen sink.


Take your unwanted medicines to a pharmacy to be disposed of safely.

What are the implications of these findings for the wise use of medicines? From a health perspective, the main issue is consumer safety. Unclear labeling and storing medicines with other products can lead to misuse, accidental poisoning and mistakes. Keeping medicines in places easily accessible by children and people with dementia puts these vulnerable groups at risk. In addition, expired medicines may not be effective. From an economic perspective, more people being hospitalized due to accidental poisoning increases the cost of the health system (1). From an environmental perspective, disposing of medicines inappropriately is hazardous to the environment.

Return of Unwanted Medicines Disposal (RUM) program

What do we do with medicines that have passed their expiry date or are no longer needed. In 1998 the Commonwealth Government began funding the Return of Unwanted Medicines (RUM) Disposal Program to help consumers dispose of unwanted medicines. Through the program, consumers can take their unwanted medicines to a pharmacy (chemist). The pharmacy stores them until they can be collected and taken to a national depot for safe disposal.

Over 250 tonnes of unwanted medicines were returned to pharmacies through the RUM Program in the 2001-02 financial year. A separate survey indicates that the nature of returned medicines is concerning. One third have not been opened, and about half have hardly been used (2). This suggests that many purchased medicines are being wasted or used inappropriately. This pattern of return was similar to that found in comparable surveys in Germany (3) and Switzerland (4).

Why people waste so many purchased medicines is unclear. The RUM program will conduct a survey of Australian pharmacies to find out what medicines are returned, why they were returned, and why they were not used. The information obtained will be used to develop programs to improve the use, storage and disposal of medicines.

If you have any unwanted medicines in your home take them to a pharmacy (chemist) so they can dispose of them for you.

1. Roughead, ED. 1999. The nature and extent of drug-related hospitalizations in Australia. Journal of Quality Clinical Practice. Vol 19, No 1, pp 19-22.
2. PHARM & APAC. 2001. Quality Use of Medicines: A Decade of Research, Development and Service Activity, 1991-2001.
3. Bronder & Klimpel. 2001. Unused Drugs Returned to the Pharmacy: New Data, International Journal of Clinical Pharmacology and Therapy. 39(11):480-3.
4. Gehler et. al. 1998. Return of Unused Drugs to Pharmacies. Schweiz Rundsch Med Prax. 87(43):1441-3.

Acknowledgement: "Medicines Talk" - Newsletter of the PHARM Consumer Sub-Committee No 5, February 2003.

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FUNDRAISING

Corks - Barrel loads of corks keep coming to the HD Centre and we now have numerous people, clubs, hotels etc. collecting on our behalf. However the bulk of the corks come from Sheila and Norm of Brisbane Bottle Exchange. We extend our sincere thanks to all our cork collectors and especially to our friends of the Brisbane Bottle Exchange for their efforts, their friendliness and cooperation in our dealings with them.

Eunice and Mary stood down from their position as "cork sorters" and we now have Anita, Betty and Julie wading their way through many hundreds of corks.

If you are interested in assisting with this fundraising activity, and live in the south-east corner, please contact the HD Office.

Community Assistance - We have received, and gratefully acknowledge major financial assistance from the following donors:

Bromilow Home Support Services
J. Clerke
R.F. & J. Farmer
Goomeri Lions Club
A Harding Smith
IM Hedlefs
Ipswich City Council
Lions Club of Brisbane/Bunya Inc.
M. May
I. Spence
J.S. Wallace
Williams Joint Venture
H.G. Wilson

Christmas Cards can be purchased through our Telemarketing Appeal. The cards come in packs of 20 (have the Association logo on the back of the card) and cost $33.00 per pack. Please ring Helen on (07)3391 8833 if you wish to place an order.


The Rotary Club of Acacia Ridge - The winning ticket of the Trailer Raffle was ticket number 3550 in the name of N. Williams. The Association sold 658 tickets and received $1.00 for each ticket sold. We acknowledge the contribution made by Bunnings at Oxley for providing a venue for ticket selling. Thanks to our volunteers for a great effort.

The Rotary Club of Acacia Ridge has been supporting the Association for over 3 years now and we are very fortunate to have them on board. Congratulations to Ron Butler on his election as President of the Rotary Club of Acacia Ridge for the coming year.


Future Fundraising Activities -

Charity Golf Day at Karana Downs - 31st August - Last year the Huntington's Golf Day was our best yet with over 110 players participating- it would be great to repeat this again this year. If you are able to form a team of 4 players, or just come along by yourself, please contact Barbara at the office for further details.

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For your Diary

July 10 AGM -Townsville Support Group - 7.00 pm at Community Health Care, Cambridge Street, Vincent.
July 15 Management Committee Meeting - 7.30 pm at HD Centre
August 19 Management Committee Meeting - 7.30 pm at HD Centre
August 31 Charity Golf Day - Karana Downs Golf Club
September 16 Management Committee Meeting - 7.30 pm at HD Centre
September 23 AGM - 7.00 pm at HD Centre

 

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