Ow I burned my shoulders on thursday, it was so hot here! Was just minding my own business potting my sweetpea seedlings on, and bob's your uncle there I was burned to a (very red) cinder! It was so quick I must be more sensitive to the sun on treatment. At least I now have some colour in my skin!
Am varying wildly between being OK (gardening, hoovering, doing dishes etc - living the high life), and collapsing in a heap feeling yuk. Am thinking the Epoetin may be on the cards after my next hospital visit on 14th June, altho of course it is very expensive and I would prefer not to spend such a lot of money on something I don't even know will make any difference to the outcome. I keep toying with the idea of a viral load check at my next appt but it's so anxiety provoking I'm not sure I would put myself through it at this point!
Spoke to my boss yesterday for the first time in ages. She was really supportive as ever, saying they are really missing me at work but coping OK for now, and that I'm not to worry about it. I keep wondering if I could be doing some work from home - perhaps a literature review around the psychological and emotional factors in hepc and treatment. I don't actually think there is much out there, but it would help me to identify a clinically relevant research question. I'm sure it's much needed.
Have a quiet day planned; my partner is busy prepping for work next week, so I will potter in line with how much energy I have at any given moment!
posted by lu @ 1:33 PM
4 Comments:
Hi Lu,
Photosensitivity a definite effect of treatment - was advised by specialist to be careful of same when my treatment began. Am using 50 spf block over my moisturizer, following a particularly nasty burn.
Weather sounds lovely. Work sounds extremely supportive. Is Epoetin not covered by your drug plan? Am not sure how the system works in the UK. Here, we've got universal health care for general medical, with private insurance (mine is through work), covering usually a significant portion of allied health services (e.g. physio), prescription medications and dental. Those without private insurance can apply for government assistance. I'd be interested to learn how things work there, as I am sometimes confused when reading of the UK bloggers interactions with the system.
Have a lovely weekend! Sue
Hi Sue
Hmm interesting. The system here is very different to yours. We have the NHS (National Health Service) that everyone is covered by - all workers pay taxes to pay for this. We have no choice but to be part of this system, but we can also pay for private insurance on top of this, if we like. Some people do have private insurance but being hepc+ve they wouldn't cover me. I work for the NHS myself, but it doesn't give you any work-related insurance for being an employee.
In order to get funding for drugs, staff, resources etc, hospital departments have to prove to a central governing body that their interventions are both necessary and effective. Of course they try to keep costs down so if departments don't really push for funding then they don't get it. In my locality Epoetin hadn't been flagged up as being necessary, so they don't have the funding to cover it. Because I have made a song and dance about it, they have now applied for this to be available to them, but it won't be sorted out in time for me.
Therefore, I have seen a private haematologist who has agreed to prescribe Epo for me privately, but of course I have to pay for both his time and the drug. A consultation is around £125 and the drug I think is £150ish a shot. The haematologist quoted me around £1500 in total, just for one month. You can see my hesitation to do this...
Does that all make sense?
Yes, the sunblock would seem a good idea - when I eventually make it to the shops I must get some! My back still hurts 3 days later tho doesn't actually look that bad!
Hope you have a good weekend
Lu
Hi Lu,
Gee, having to "apply" for medications is quite a lot different than here. While we do not have access to the extent of medications available in the U.S., physicians are able to prescribe, without individual application to a governing body, medications approved for use in this province. Special dispensation is required for other medications. The Schering redipen was approved for use in Ontario immediately prior to my starting treatment, hence I was able to obtain it rather than having to do the mixing thing. My insurance plan has covered 100% of the medication. While not required, most employers, certainly the larger ones, provide insurance coverage through employment. The majority of this is usually covered by the employer. Insurance plans are variable in their coverage for ancillary health care services - we are fortunate to have a very good one. As well, most employers, but not all, have short and long term arrangements to cover paid sick time. Paid maternity/paternity leave is one year (can be split between parents if desired), at an income percentage rate of pay.
We too pay a lot in taxes. Approximately 35% of my gross income comes off to personal taxes. There are very few tax exemptions. We also must contribute to a mandatory Canada pension fund and pay employment insurance premiums (meaning that you can file for time-limited income percentage benefits should you lose your job for reasons other than being fired). Many of us are now required to pay a separate health tax. We pay sales, goods and services taxes that federally and provincially together total 15%, on just about everything that can be purchased. Tariffs are very high. Property is taxed provincially and at the municipal level.
Despite all of our taxes, there are continuing problems within our basic social support structures, particularly education and health care, which continue to face shortages. It is worrisome to speculate as to what will happen to health care in this province over the next few decades. Our universal model of health care for everyone is wonderful and I really believe in it, but is it affordable?
1500 pounds per month is an incredible amount of money. Is the political expectation then that you compromise your health if unable to pay such huge sums?
Sue
Hi Sue
Wow! Tax, tax and more tax. I must say that I agree with paying higher taxes in order to provide good public services. The Liberal Democrat party in UK are the only ones who are upfront about needing higher taxes for this reason.
The NHS is localised so altho it is a national service, it is divided into local 'trusts' that have their own set-ups. It is dependent on where you live as to the service you receive. So for example, Maggie in Scotland has been able to access Epo with no problems at all and this has been funded by the NHS.
My peginterferon and rebetol are funded by the NHS - the trust kindly (!) said that if I wanted them to prescribe Epo, I would have to pay for the whole lot privately! Obviously I can't afford that! We had a right hullabaloo about it, with letters going back and forth to the clinical lead of the trust saying it was unethical to deny such treatment on the basis of money etc etc. Because of this it is now in the pipeline, and although it won't be ready for me, the nurse assured me that I have done something really positive by bringing it into the foreground for the future. I am really glad to have done this.
So, yes the assumption is at the moment, that if I can't pay for epo then I can't have it. It is the same elsewhere in the country. Very short-sighted if you consider that dose-reduction can reduce one's chances of success, and the long term costs of treatment failure far outweigh those of providing epo!
Anyway, it is a sunny/cloudy day here in the north - we rarely get a whole good day, just lots of patches of sunshine intersperced with cold spells! However, your weather sounds even more inclement than ours! Hope temperatures are improving for you and that you're getting some much needed sunshine!
Lu
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