The media hypes up medical advances as much as anything, in fact often even more. And those of us with chronic illness are often caught between the hype and people who care about us as well as people wanting to be the first to share. It is exhausting. Because I am indeed always searching for information about therapies and I often have to divert focus from that to try to not just say that the media has hyped something beyond any real help but to also prove it. And to do that I often have to source the original papers and read very dry very long papers and hunt down reviews. None of which is all that easy to appreciate outside the field.
So what can you do as someone who cares? Take five minutes to do a bit of research. It’s a sign of respect to us that you will put that little bit of extra thought rather than just throwing a link at us. That’s it. Give us the same level of respect you might do when hearing the latest news about a film franchise.
PubMed is a really easy to search tool that lets you find at the very least the abstracts of a vast number of papers, it is compiled by the United States National Library of Medicine. It may not tell you about the quality of the research but it is by far a better source of information than the media.
If you are feeling bold you can even look through the journals these papers are published to. Annals of the Rheumatic Diseases is a great source. I also am subscribed to several Nature alerts including immunology, Medicine, and genes and immunology. So I am very well covered for getting the latest news!
Regardless of the therapies we are on, please do trust that we are being proactive, that we are trying everything we have access to.
We are also the ones who have lived with our disease and our therapies, so we probably are more informed about a treatment than someone who doesn’t in fact need it.
I am proactive. But I can only be proactive so far. All the medication I have been on has had a tremendous delay between trials, approval, and my access.
Therapies pass through many levels of testing before being offered to patients. Even clinical testing trials are often limited to specific gender or a combination of age and gender. Many of us simply cannot participate in trials, and sometimes that comes down to disease that is too active to halt current therapy to trial.
Rituximab was trialed in the mid to late 1990s. It’s an antibody that targets a specific type of B cell that is very active in several cancers as well as several autoimmune diseases. This makes it both effective and relatively safe compared to most other treatments. It doesn’t obliterate the immune system, nor does it slow down fast replicating cells (methotrexate is used for autoimune disease as well as cancer treatments as in both cases cancer cells and immune cells include very fast self replicating cells!)
It was trialed in 2004 on Rheumatoid patients, and recommended in the USA in 2006.
My first access was in 2014.
My third yearly dose is in two weeks. Four months from this I will get my final evaluation to decide if I’m allowed this treatment again and at a therapeutic rate. This is because I have refractive disease and it pretty mush resists all treatment. But this therapy works for me, in a limited fashion and for only about 6-8 months at a time. But I have to fit a very specific criteria to still have access after this round.
Continuation – rheumatoid arthritis – re-treatment in ‘partial responders’ to rituximab – rheumatologist
Re-assessment required after 2 doses
All of the following:
1.1 At 4 months following the initial course of rituximab infusions the patient had between a 30% and 50% decrease in active joint count from baseline and a clinically significant response to treatment in the opinion of the physician; or
1.2 At 4 months following the second course of rituximab infusions the patient had at least a 50% decrease in active joint count from baseline and a clinically significant response to treatment in the opinion of the
1.3 At 4 months following the third and subsequent courses of rituximab infusions, the patient demonstrates at least a continuing 30% improvement in active joint count from baseline and a clinically significant response to treatment in the opinion of the physician; and
2 Rituximab re-treatment not to be given within 6 months of the previous course of treatment; and
3 Rituximab to be used as an adjunct to MTX therapy; and
4 Maximum of two 1,000 mg infusions of rituximab given two weeks apart.
So let’s hope I meet this as imperfect a solution as it is it is the only solution right now and for the forseeable future.
I can keep an eye on trials but they all have this same delay between trials and approval and approval and acess.