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Drug adherance

I have been asked to give a short presentation at the EBMT meeting in march 08 about the problems that some CML patients experience with taking oral drug therapy over many years.
if any of you have any thoughts about this I would be really grateful if you would share them with me.
I am sure that a big part of the problem with taking daily oral therapy like Glivec, Dasatinib or Nilotinib is that most people feel fine and can resume normal life, this may mean that it is easy to forget that we have a life threatening disease.
also people do not like to think of themselves as being ill or being a victim of cancer or being dependant, so this may be another factor.

there may be a problem for some people who experience uncomfortable side effects. maybe overall and compared to other therapies such side effects are easily managed but i am sure this can be a factor in ' forgetting' or building up a resistance to taking the drug on a daily long term basis.

maybe some people do not understand the way inhibitors work and that blood levels must be maintained if there is to be a long term consistant managment of the disease.

if you have any comments on the above, or other ideas please let me know.
if you want to email me privately about your experiences i will respect your privacy. i really just need an overall picture of some of the reasons that might lay behind this increasingly worrying problem.

my private email is
sandr1ne@aol.com

thanks,
Sandy

Sandy

Thanks for doing this presentation.

A few points:

When Val gets out a new pack of Glivec,the first thing she does is to very gently write on the foil side of each pill sheet (without breaking the foil), the day of the week on which she should be taking each one. She does that because it is not only easy to forget but it is also not easy to remember whether you have already taken it (even two hours later)! That way she can be much more confident and if the "Did I take Glivec after supper" question arises at bedtime, she has only to look at the packet to check. It would be so good if Novartis could consider producing packaging with the days of the week already printed on them (like some other drug packaging).

I agree with all your other points.

The side effects issue is one that people try so hard to cope with as best they can, sometimes with other therapies to try to counteract the effects. I think it is easy to forget that coping with side effects can be a very real strain in itself. When Val came off Glivec for three weeks before her stem cell harvest, she kept saying she felt "really alive" for the first time in a long time. That meant that she dreaded the inevitable and vital re-starting of Glivec after the harvest because she knew she would have to also re-start the side effects (including, the tiredness as well as others). So I believe it isn't just the side effects themselves; it is also the effect they have generally on well-being at a much higher level of living.

I also think that because Glivec is so effective for Val, the feelings of nervousness about routine hospital visits are heightened. I am sure the reason is that Glivec is so effective that she leads a normal life, putting to the back of her mind (most of the time!) that she has a serious illness. So the hospital visit is a very stark and very real reminder that the illness is still there. I have the same feeling myself: one day I am playing golf with Val and the next day we in the waiting room at the Hammersmith. I think that is hard too.

On maintaining the levels of the drug in the blood, I do have a concern whether that is made clear to all patients (as opposed to the instructions on the packet: take one every day with food. If people feel better, they may tend to be less concerned about taking the pills. It would also be useful for people to know that missing one day by accident on very rare occasions is not a disaster that should lead to panic but that it is something to be avoided.

David

hi David, thanks for your feedback and thoughts on this issue. i thought that you would be interested in an excellent new report from the United States on the scope of the treatment non-adherence problem and proposing a national action plan:

http://www.talkaboutrx.org/documents/enhancing_prescription_medicine_adh...

i know novartis take this issue seriously as i was asked to attend a meeting earlier this year with other PAG organisers from various other european states. it was interesting to hear the ideas from others about this problem and how we as patients can help. Val's self made pill dispenser/reminder is one idea that was put forward and a very pratical way of making sure you know if you have taken your drug.

but as you say, the other more intractable issue is the side effects and how to best control them long term. i do agree that patient education of how the TKI's work to control this disease it crucial to understanding that you must continue to take the drug regularly. nilotinib/Tasigna is a challenge in itself as it requires a completely different routine to that of Glivec... it is taken on an empty stomach with fasting for 1 hour before and 2 hours after.... it needs to be taken twice daily and at precise times due to the fasting. so organising the day to accomodate this needs serious thought ;o)

novartis have worked hard to produce patient materials to help with this sort of schedule, but i am sure some people will still find difficulties with the whole process of taking any drug for life!

thanks again for your feedback,
Sandy

Hi Sandy,

A reply from the perspective of a carer for a young CML patient.

The psychological impact on a teenager of being told that he could have to take a drug FOR LIFE to maintain his health is quite devastating for a number of reasons. Firstly the routine - there are days when Rio is away at friends' houses etc and it is all too easy to forget about his glivec at supper time. We try not to be too 'hard and fast' about the timing but there is a bigger impact of course if he stays overnight away from home, when other adults have to be made aware of the need for medication and take responsibility for it. This leads onto a deeper issue - all he wants is to be like his mates and they do not have to take medicines every day, so he resents the difference his CML imposes on him. Following from this - remaining on lifelong medication means a lifetime of medical intrusion and being restricted in the choices he can make about what to do and when. But most of all, it is so very hard for a young person to begin to understand and accept that the rest of his life would always have to include consideration of the need to manage CML.

This might all sound rather bleak, but the ideas in essence have come from Rio himself. The day to day reality is that he puts it out of his mind and gets on with his life, is currently extremely well and coping with the minimum of side effects, but there is undoubtedly a deep psychological effect.

As his carers, we naturally feel concern about how he would manage when he moves away from our daily care and lives independently. Would he take his tablets? Would he keep his hospital appointments? Would we know? We are very aware that it is important for him to begin to assume responsibility for his medication etc and to feel that he has a good degree of control over what happens to him, but this is an area that requires a high degree of careful, sensitive handling!

I read what David said with great interest and would echo two phrases in particular: that 'the hospital visit is a stark and very real reminder that the illness is still there' and also the effect 'on well-being at a much higher level of living'. Those are real issues for carers as well as patients.

In medical terms, the effectiveness of Glivec etc versus the risks to an individual of having a SCT have to be considered. The psychological effects of these options are also vitally important.

Hope this is helpful!
best wishes,
kestrel

Hi,
As a Pharmacist, I am very much aware of the problems with non-compliance to medication regimes. I see patients who are not uncommonly on upwards of 12 or more medicines!!I would defy anyone to be accurate in dosing that number of times a day.

One issue around complying with the correct dosage at the correct time is how motivtaed is the person to take the medication. For example if you are in pain, there is an obvious motivation to take your pain relief medication.
Where compliance becomes more difficult is when there are no obvious symptoms eg in hypertension. In such cases, often the side effects of the medication are worse than the effects of the medical condition, again hypertension is a good example.
Compliance with medication is a big problem, and there is no easy answer. I have to occasionally remind my wife that she has not taken her Glivec. I also have to take long term medication for crohn's disease, and I am fully understanding of the problems and often forget doses myself.

One possible help is a pill box into which doses of medication can be placed on a weekly basis.These are subdivided into sections for different times of the day, and different days of the week.
If using these, it would be advisable to leave the tablet in the blister pack until ready to take, the foil on the pack is readily cut to allow single tablets to be removed but leaving the packaging of that tablet intact.
This of course will only act as an aide memoire, but will not overcome the issues of not wanting to take the medication because of side effects etc.

Paul

thank you all for your ideas and thoughts about this subject. even the words used to describe an individuals willingness to embrace their therapy and be 'good' are rather proscriptive.
complience
adherance etc etc.
these words suggest an expectation of obedience to a regime and maybe some of us resent that expectation, even when we understand the possible risks of 'forgetting' too often.

i remember that after my sct i was required to take cyclosporin, amongst other drugs, for some time... this drug guards against rejection of the graft but it also has some side effects... t
he most visible of which is the fact that it causes the retention of facial hair and blocks natural shedding of that hair. so the sort of 'peach like' hair that women normally have on their face grows longer and longer. rather like angora...i was really aware of this and found it hard to cope with, expecially as i had no hair at all on the res of my head...
i think this had the effect of making me hate the cyclosporin capsules so much that i found it very difficult to swallow them at all, even though i knew i had to and that it was not forever.
i also started to imagine that they made me feel sick and became ever more sensitive to the smell of them- actually they didn't have any smell.

i took Glivec for over 3.5 years (and then again for 11 months after my sct)and forgot to take it only once (or maybe twice) but i now think that this more positive attitude may have been because my response rate was rather slow at first and it took around 18 months for me to get to CCR-
i was acutely aware of each drop in ph+ % over that time and knew i had to get as low as possible.

after the pcr's got to around 0.053% they did failed to get any lower, infact they started to rise little by little, which had the effect of my becoming even more motivated to take Glivec... even to take more in the hope that it would stop the increasingly obvious rise in bcr/abl levels.

so yes, i was motivated to take this drug every day... even though i hated the way i looked and hated the tiredness but i was overwhelmed with the desire to survive at all costs and i knew there was little else available at that time, apart from transplant.

reading kestral's account of rio's feelings makes me wonder how i would have felt if i had been diagnosed in a less agressive stage of the disease and had acheived ccr quickly and held consistantly low levels of bcr/abl.

i think it likely that by now i too would have started to experience difficulties with the daily routine.

i also feel it is probably a little hard for those of us who, back in 99-2000, were so excited about the revolution in therapy that Glivec represented, to imagine forgetting or even not wanting to take this life saving drug.

however, on an optimistic note i would say that things have moved on so much in the last few years and there are some exciting options opening up.

so kestral, maybe by the time rio is ready to strike out on his own, we will have a drug (or a combination of drugs and/or safer form of transplant) that means a 'cure' is more likely for a greater proportion of those of us unfortunate enough to be diagnosed with cml.

even though my disease bacame resistant to Glivec (Dasatinib was not available at that point in summer 2003) i had a sibling donor which meant i was able to take part in a study of reduced intensity sct/glivec/DLI and that combined option was right for me.
hopefully this study will prove to be successful for more and more of us- the protocol is now being used in 4 centres around the UK and prof. holyoake will present the published data at ASH.

once again, thanks to david, paul and kestral for taking the time to share your thoughts with me. your views will really help me with my presentation at the EBMT meeting in March 08.

Sandy ;o)