DON'T WORRY BE HAPPY: 10 TIPS FOR A SMOOTHER RIDE ON THE PROGRAM
Being on the Opiate Treatment Program (OTP) can be complicated, as there are a lot of rules and regulations. We often feel like we are not in control, but there are many things we can do to make our lives easier and steps we can take to reduce stress and conflict.
Throughout Australia, there are a number of phone services to support people on the program. In NSW, we have the Opiate Treatment Line (OTL), an information service that also registers complaints. In Victoria, this service is run by peers, which means everyone you talk to has lived experience of OTP. Victoria’s Pharmacotherapy Advocacy Mediation Support (PAMS), operates out of NUAA’s sister organisation Harm Reduction Victoria (HRV). PAMS supports people on the program by hooking them up with services, helping with transfers and resolving disputes.
User’s News caught up with PAMS co-ordinator Sarah Lord to get the benefit of her years of experience in giving information, solving problems and advocating for Victorians on OTP. She told us that most questions and complaints about the program relate to the 10 things in this article. We have made them relevant to NSW and we think that once you understand these, you will be a lot happier.
Never forget methadone and buprenorphine are strong opiates.
Listed as Schedule 8 (S8), methadone and buprenorphine are in the category of “Controlled Drugs”, “Restricted Drugs” and “Drugs of Addiction”. This type of drugs is regulated by government with strict legal controls around its supply. The possession of these drugs without a prescription is an offence. If they are not taken as directed or the wrong people get hold of them (anyone without an opiate tolerance which is most of the population!), they can kill.
The strength and risk of overdose that comes with strong opiates means that prescribers, dispensers and patients (that’s you) have serious legal and ethical obligations and responsibilities. As a user who is used to buying strong opiates (including methadone) off the street, you might see the associated paperwork and regulations as power games and discrimination – and sometimes it is – but the rules are there to keep everyone safe (including you).
Make sure you always have a valid script.
It’s your responsibility to make sure the pharmacy or clinic has a valid script. If your script is out of date, you cannot be dosed, so keep your eye on when it expires.
Some pharmacies and clinics will give you a reminder that you are about to need a new script and takeaways should have the script date on the label.
Sarah suggests you make your next appointment with your prescriber for the day before your script expires before you walk out the door of your last appointment. Then put it in your phone as an alarm or make a sign for your fridge. If you’re at a clinic, ask them to remind you the day before. Some GPs have SMS reminder services you can take use.
Keeping appointments is essential. If you miss too many, your prescriber may decide to exit you, even if you have great excuses. They may update a script by phone in an emergency (like your child is in hospital) but usually they will want proof and may do it only once.
Ask to be informed about when your prescriber will be away from the office and make sure you get the name and number of their locum (replacement doctor).
Because OTP meds are drugs of dependence, you always need to be able to get in touch with your prescriber or their replacement. It is your doctor’s responsibility to nominate a locum (replacement doctor). Ask your prescriber who you should call in an emergency if you can’t get hold of them.
Usually, if you are at a clinic or a big GP practice, you will be given another doctor there, or you can ask to see one. If your prescriber works alone and they haven’t told you who to contact, call your closest public clinic for help. Just be aware that they will need to see you, and that depends on a prescriber having an available appointment."
Allow plenty of time to sort out changes to your program and ask for help early.
Ever heard the expression “Your lack of planning is not my emergency”? This means you should not expect other people to run around fixing your now “urgent” problem because you put off dealing with it or simply didn’t allow enough time to get the job done.
Anything that involves negotiating people, technology and approval processes – so basically everything in OTP – will take time. If you need to involve other people, respect them by getting things moving as soon as you can. Make appointments with time to spare, organise holidays and transfers as soon as possible, ask people how long they need to do what you are asking and build in extra time in case something goes wrong. Remember, you are not the only one who has to travel or organise children.
If you are having a problem or dispute that may threaten your program, reach out for help straight away.
As a rule, get onto things as early in the week and as early in the day as you can. Here’s a tip: it’s almost impossible to get something sorted on a Friday afternoon for the weekend.
Paying for your dose is a priority and it’s your responsibility.
Sarah says she tells people: “You have two main priorities – your rent and your dose. Everything else is negotiable.” Chemists and clinics may give you credit – and they often will give you a few days’ grace – but they have no obligation to dose you unless you pay their dosing fee. This is a fee you willingly agreed to pay when you began with that dispenser. It is irrelevant that OTP medications are drugs of addiction. You can also be charged for missed doses, so even if you miss a dose because you can’t afford it at the time, you may still owe for it. Even you can get credit, only use it in an emergency and catch up as soon as possible – it adds up quickly.
Always pay with an ATM card if you can.
A lot of disputes are about money. If you always pay with your card, you will always have a record that you can call up. It can be hard to organise receipts, and the ink on some receipts fades with time. By always using your ATM card, you can always provide proof that you have paid your bill.
If your service or chemist doesn’t do card payments, they are legally obligated to give you a receipt for any amount over $75 and must give you a receipt on request no more than one week after you ask for it. Always collect your receipt, even when you are in a hurry, and keep them in the same place so you can refer back to them if there is a dispute.
The price of OTP meds is out of your control so it’s no use getting upset about it.
In NSW, there are no restrictions on how much you can be charged for your OTP medication.
Medications on the Pharmaceutical Benefits Scheme (PBS) have a built-in profit margin, but methadone and bupe don’t. The actual medication is free, courtesy of the Commonwealth Government, but your chemist or private clinic does not get paid a dosing fee. To allow chemists and private clinics to get paid for their services, they charge an administration fee. Unfortunately, there is no government guidance on how much the fee should be and dispensers can charge whatever they want.
Those of us lucky enough to have a choice about where we want to be dosed can compare prices before we decide. If price is more important to you than the freedom of takeaways, public clinics are free. Otherwise we just have to suck it up. You can write to state and/or federal Ministers for Health to complain, but this one is taking a lot of lobbying by a lot of people over a long time and it’s not looking like being sorted any time soon.
There is no hard and fast rule about takeaways – it's entirely up to your prescriber.
The Clinical Guidelines allow for people to get a takeaway dose after they have been on the program for at least 3 months. Because suboxone is a safer drug than methadone, patients on suboxone can access more takeaways, theoretically a month’s worth but more usually up to 4 doses a week. It is recommended that people on methadone have a maximum of 4 takeaway doses a week. It is also recommended that those takeaways be split – that is, not given 4 days in a row.
However, whether you get takeaways, how many you get and any special conditions, depends on your prescriber. They can give you whatever takeaways they want, from none to 6 per week, plus public holidays and larger amounts for holidays, as long as they clearly document the reasons for their decisions. They might also give you more or less at different times, depending on circumstances.
It is important to realise that prescribers have a serious legal and ethical responsibility, because methadone and buprenorphine are “Controlled Drugs” that can be dangerous if taken the wrong way or by the wrong people.
It is up to your prescriber to assess the risks of giving you takeaways, balance that against your needs and make a decision. No individual thing should be a deal breaker or maker – it's about the whole picture. The sorts of things they might consider include:
how long you have been on the program and how well they know you;
the size of your daily dose and how many mls of medication will be “out there” as takeaways;
whether you pick up your dose regularly;
how well you follow the rules of your clinic/service;
if you can and will store your dose safely, by having safe and stable living conditions and understanding OTP meds are fatal in the wrong hands;
how helpful takeaways would be in terms of participation in life (work, study and family responsibilities);
how difficult daily pickup is for you in terms of location (transport issues; living in a regional or remote area), opening hours (getting to work/uni, getting kids to school) or general health (how mobile you are);
how often you present intoxicated or test positive for illicit drugs;
any history of injecting or diverting your dose.
Your prescriber’s particular issues will also come into play. They will consider the rules of their practice/clinic and what occurs with other patients, including good and bad experiences they have had. It may not seem fair that you are judged by the behaviour of others, but a prescriber who has been involved in an OTP overdose case is going to be more conservative with takeaways. Also, a more experienced prescriber may be comfortable giving more takeaways whereas a newer prescriber may prefer to keep strictly to the guidelines. A prescriber who has recently been reviewed by the Ministry of Health because they have several patients on high numbers of takeaways may decide to cut the numbers of takeaways all their patients are on.
If staff dispensing your medication are not honouring your prescription and you are not getting the takeaways you should, let your prescriber know as soon as possible.
There can be a lot more to going away then just getting a few takeaways. Learn the process and plan it properly.
If you want to go away and need to sort out your medication, allow plenty of time to arrange everything. Do your research and don’t assume it will be a simple matter to get things like extra takeaways or a transfer. Ask your doctor what paperwork they need from you – things like plane/bus tickets and invitations or official letters.
If you are going away and need to sort out your medication, you need to know the rules and get the process moving early. Raise the issue with your prescriber even before you have firmed up arrangements to make sure they will be able to help you. They will need to see tickets and other details.
Don’t assume you will get takeaways. Some doctors may prefer to do a transfer to another service instead. This means you will be dosed from a new chemist or clinic. This is fairly easy if it is within your own state, but if you are going interstate you will need to find out the rules. Every state has different arrangements. For example, if you are going to Tasmania or the Northern Territory it is not a simple matter of going to a clinic or chemist there and picking up your dose. You must see a prescriber registered in that particular state/territory and be dosed under their prescription. This means appointments and paperwork. Make sure you take ID with you.
If you are going overseas, different countries have different rules. For example, you can’t take methadone into Japan, only buprenorphine. You can’t take any OTP medication to Singapore and Russia – they are illegal even on a script. And Lebanon will only allow 5 days’ worth of a restricted medication. Do your research about the countries where you are going. You need to take all your paperwork – including a letter from your prescriber, a copy of the script that has been certified (stamped / initialled) by your doctor and a statement on your doctor’s letterhead with all your medications listed on it. Make sure they do NOT refer to illegal drug use, drug dependency or the Opiate Treatment Program – the reason you are prescribed OTP meds should be for a “medical condition”. Make sure all your medication is in its original packaging with your name on it – you need to look legit. Medication issues can depend on purely subjective opinions of the customs official on duty that day. There may also be special forms you need to fill out to carry a “Drug of Addiction”, depending on where you go.
Remember if you are getting extra takeaways, you will need to give your chemist plenty of notice – especially if you are getting physeptone tablets, which they may have to order in.
You are responsible for your dose so look after your takeaways.
If you lose your takeaways, have them stolen, vomit a dose, have it leak out or taken by police, you are unlikely to get it replaced. If you do, you will need to be able to get in to see your doctor for an appointment, get a new script and then pay for the replacements. Your doctor may do it once but is unlikely to do it again – or at least for another 10 years or so.
People also report being lectured by their doctor when they confessed to losing takeaways. Other doctors have responded by cutting the number of weekly takeaways or refusing further requests for holiday takeaways.
So look after your takeaways. Check the lids are tight. Lock up your doses in a locked medical cabinet. Don’t leave them in your bag or out of a bench. They do NOT need to be kept in the fridge.
Just a tip about air travel – always have your takeaways in your hand luggage. They can leak/evaporate in the baggage compartment and if you are going to Brisbane, but your luggage goes to Perth, you will have an unhappy holiday.