Tag: switch HIV medication

Me and my meds

hivstigmafighter

Travelling is always exciting until you remember what has to be done before leaving your home!

My lovely people, in your life there are always moments you need to travel from your home, whether this is for family visits, holidays or work related. We are all travellers.

We do not leave our medical conditions at home, we are traveling together, and so is our medication. So, when you know your travel dates, what is the first thing that comes to your mind? Is it the excitement of packing your bag, check your outfits, mesmerising over the things to do when you arrive?

My first thing is to check if I have all my medication, and here comes the hardship. When you take only 1 pill a day it is easy to count what you need. But imagine when you live with co-mobidities and you have 4, 5 or more medications to prepare? And if you will be gone for a month or longer?

This is not easy, but it is my reality. I do this many times a year, so I developed a certain routine, especially when I go for a longer period. First of all, I always make sure to memorise the looks, shapes and colours of my meds, I even know the size and colors of the packages. That way I know what I take and what I need for my travel. And I am blessed for not taking so many pills anymore since my Healthy new Me lifestyle. Then, once I know that I will be traveling, I will call my pharmacy well in advance and ask them to provide me with a stock of at least 3 months of meds.

Here in the Netherlands, a few days later I will get an email that my meds are ready for pick-up. Then I will go as soon possible to pick them up and do a very careful check at home. Because, although they said everything is ready, my experience has taught me that they sometimes substitute med for another med with maybe the same function but from another brand and composition.

Unfortunately, many times I need to go back to the pharmacy to sort out what happened. And often I get the same response, that a certain type of pill is not available and that it will take a very long time to deliver and that they decided for me to take an alternative.

To be honest with the pharmacy, I cannot even blame them too much because they are actually instructed by insurance companies to prescribe alternatives because the insurers refuse to pay for certain brands as they are more expensive. But the thing is the pharmacy doesn’t inform me about this change beforehand. And I tell you, this changing of meds without informing me has already gotten me in trouble a couple of times as some of the alternative meds gave me all sorts of allergic reactions!

So today I am preparing my journey, and again I realize that meds are missing. I finished to check in with them just now, only to hear that it is not available and it will take many weeks to be delivered. As usual they proposed an altenative, but luckily I already know I am allergic to these meds and was pretty sick for a few weeks when I took it the first time a few years ago. So I totally panicked because I must take this medication to regulate my blood pressure. The pharmacy now did their search and came up with an alternative. As it literally takes weeks I now must take this new meds and I can only hope there will not be any serious reactions while I am travelling!

It does worry me sometimes how often I need to stand between the pharmacy, health insurers and my healthcare providers, to make sure they make the right decisions around my medication. Memorising names and apperance of medication and counting doses can be a pain in ass when you are doing it a lot, and there might come a day that I can’t do it anymore. What will happen then? I am sure I will find a solution. Time alone will tell and with my positive spirit nothing is impossible!

Being an avid traveller, I do have extra exercice and motivation to stay adherent and loyal to my medication. Otherwise, how can I enjoy holidays or work abroad when I am not healthy?

My dear person dealing with double trouble (or even more) morbidities, don’t think of winding down or discoving new places before dealing with the pharmacy and insurers for your med. Prepare them well in advance, don’t forget to take your medical passport and make sure to check the time zone of the country you are visiting to adjust your medication schedule.

Those are things I always checks before I start my travel.

Me and and my meds are inseparable!

Peace,

Eliane

HIV medication exchange

hivstigmafighter

I would like to share an article (in Dutch) published on 9 Jaunary in the magazine Hello Gorgeous. It is about a topic that I am really passionate about: Ensuring that unused HIV medication, still in its original packaging and meant to be destroyed here in the Netherlands, reaches people with HIV in places where there is still no access to life-saving medication. In the text below you will find the translated text in English:

Ready to be sent to people without HIV medication in Romania

Hello Gorgeous: “How did you get this idea to collect HIV medication for Romania?” Eliane: “Last year I met a Romanian woman during a meeting of the European AIDS Treatment Group in Brussels. She was looking for people who wanted to donate their HIV medication to pregnant women with HIV. We became friends on Facebook and kept in touch. When she told me that these women are regularly without HIV medication, I was heart-broken. Without HIV medication they risk their children being born with HIV. I don’t understand this is still possible in Europe. “

Hello Gorgeous: “What are you doing to tackle this?” Eliane: “I am continuously asking people in my network, via messages and emails, if they have any medication left. Often, this happens when people switch medication, then they are left with unused medication. I collect this, compare it with a list I get from my contact in Romania, and then I send the required medication to Romania. It hurts me, to see we are so committed to climate action, for example by recycling, but that we are still throwing away perfect medication which can save lives elsewhere. This only happens because our rules are such that medication prescribed for one person cannot be transferred to someone else.”

Hello Gorgeous: “Have you also approached pharmacies to help you?”. Eliane: “Certainly, I talked to a number of pharmacists here in Amersfoort. They told me that they used to collect medication in the past but that this ended when health authorities required them to stop this. I always tell them to give it to me secretly. It is so difficult to accept that unused medication is destroyed while we can find a purpose for it. Meanwhile, we still worry about someone dying every 40 seconds of the effects of AIDS due to a lack of access to medication.”

Hello Gorgeous: “What can people do if they want to send you their unused HIV medication?” Eliane: “If people switch their HIV medication and still have unused supplies at home, they can contact me. Send me a message via hivstigmafighter@gmail.com and you will hear from me.”

This message gives me courage to continue HIV medication exchange

Hello Gorgeous, thank you so much for publishing this article. Already I have been approached by people, asking me how to send their left-over medication to me. Many people living with HIV in Romania will forever be grateful to you.

I really hope to expand this project in 2020, so more people with HIV in Romania or elsewhere in this world can continue using life-saving HIV medication even.

Peace, Eliane