I thought that this was an important section to add to my Blog, medication is a big part of my life now.
The first lot of medication that the specialist started me for a week on was Prednisolone, a steroid used to bring down inflammation. The next set of medication I was to take was Hydroxychloroquine, which is an antimalarial drug (for more information on any of the drugs I talk about, click their link). The Hydroxychloroquine helped for a while, but my body got used to it and flare ups are frequent again (Every week/two weeks).
I received a letter yesterday after I had been back to my doctor asking to have a medication change, they have suggested putting me on Methotrexate, which is a drug used to treat many conditions including various Cancers.
The letter reads:
“This [Methotrexate] is a more potent medication to dampen down your immune system against your joints. We would require you to have reliable birth control with this medication as it is harmful to a fetus.”
I need a series of blood tests, and as stated birth control. That doesn’t bother me, I think that’s playing it safe. What bothers me is that I know that Methotrexate is a strong medication, I know people that have been on it and I know of the side effects. Granted, everything has potential side effects and so on, but I worry about exactly what I’m putting into my body, yet I’m caught in the place where I know that I must take the medication or else I can only be defined as a potato. (Potato = I can’t really do much during a flare up) As said above, it is trial and error, but trial and error means money, and as a student, that is money that I really don’t have!
I started looking into medical exemptions, I thought Lupus would be the grounds for a medical exemption because of the impact it has on your life if you can’t afford to buy the medication – Wrong, I was so very wrong.
I know from experience that if I forget to take my medication my life is miserable, Lupus completely takes over, my immune system has a field day with my joints and I am left in complete agony, so I need to be able to take my medication. However, now I am turning 19 years old on Saturday I realise that I will have to pay for my prescriptions at the current rate of £7.85 per prescription. I can completely understand paying for medication, it is expensive to make. However, what I can’t understand is why a long term illness that is disabling is not covered by an exemption?
My issue with paying for the medication is that I personally am a student, I’m not in a situation where I have money. I am in the trial and error stage of finding a medication or a combination of medications that work, at £7.85 per prescription I can’t afford to be in this position.
Then it hit me, if I myself, as a student, that pays solely for herself, cannot afford to pay for my medication, and that is a scary thought. What is even scarier is that people with families; people with children, husbands, wives, may be on a low income having to support that family, make money and somehow pay that prescription each month it has got to be difficult, and I sincerely applaud those of you that manage this, I really do.
According to the NHS website, Lupus sufferers are not exempt because it is classed as a temporary disability:
- A continuing physical disability which means the person cannot go out without the help of another person. Temporary disabilities do not count even if they last for several months
I argue this “temporary disability” lark with the hard truth:
- If we can’t afford to take our medication then we will have to have someone constantly help us with daily tasks as our disease will be rife.
- We will struggle to find work/not be able to work at all if we can’t afford to take our medication as we will physically and mentally not be able to cope with the pain and the limitation of movement on our bodies. Thus creating further financial issues and more stress for ourselves which causes Lupus to flare up.
- If we want to live our lives the way we should be able to, without limitation, we cannot and if we push ourselves, we can very easily become very ill.
- While for some people Lupus can be mild, but in some cases if Lupus goes untreated it can threaten your life by harming your vital organs such as the heart and brain, which then leads to further money to be spent by the NHS treating worse problems that Lupus has caused because we simply couldn’t afford our medication.
Importantly, this quote from Lupus Foundation of America goes to show just how much we need our medication:
“Before medications (like steroids and other immunosuppressives) were available to treat lupus, overall five-year survival rates were less than 50%. With expanded therapeutic options, 5 year survival rates are now over 95%.”
So, I’ve decided to shout about this. Lets get these points heard. I have started an E-Petition to get this point heard by our government. While there is help for us out there, I don’t think that there is enough.
Please sign as we need 100,000 signatures for it to be considered for discussion in the House of Commons.
Lupus UK, details benefits that you may be entitled to if you are a sufferer: http://www.lupusuk.org.uk/living-with-lupus/benefits
As a student I am entitled to a DSA (Disabled Students Allowance) via Student Finance England, it very helpfully pays for the resources I need while I’m in education – not my medication.
NHS website on ‘Help with prescription costs’ details how to go about claiming entitlement to help with prescriptions and more on getting a pre paid prescription certificate as an alternative answer to an upfront medication fee: http://www.nhs.uk/nhsengland/Healthcosts/pages/Prescriptioncosts.aspx