Firstly, a thank you to Anon_22, whose suggestion prompted this thread.
To start wilh, I would like to provide a little background to summarise the rationale for why we might want to mobilise patient groups as a Fluwiki project, and the reasons behind the need to do so. Having done that, I have listed a few proposals so that we can get such a project underway - so please bear with me and read on, and then feel free to comment!
Stockpiling medications
We are all aware of the importance of individual preparation for a pandemic, but, as we all know awareness of the need to prep is not optimal in either the US or Europe. At present, the primary focus in the US is on food preparations with a direction for individuals to ensure that there is a supply of medications for treatment of chronic conditions held by individuals. Ensuring that individuals have adequate supplies of essential medications serves two purposes:-
1. Reduction of incidence of ‘collateral mortality’ in the midst of a pandemic.
This is where patients who may require insulin, heart drugs, chemotherapy and so forth may not be able to get their needed medications in a pandemic. Supply lines for medications that are not directly assoicated with pandemic treatment or mitigation are as likely to get as disrupted as everything else. Pharmaceutical companies are global in their manufacture, and often raw material or tablets will be made in one country, to be shipped to another for packaging. This is done for a whole number of different reasons, but is fairly universal. Additionally, in this JIT world we live in, on the whole, most companies will only ever plan to hold sufficient supplies to meet 6 weeks demand - sometimes less. It is easy to see that a run on supplies would quickly cause out of stock situations, even in non pandmeic times (and this often happens already!). Additionally, manufacturing plants often make or pack several different types of medication, and these can only be made in rotation. Surge capacity is gained from outsourcing to contract manufacturers. All in all, in a pandemic, not only will the supply lines be highly vulnerable, but so will manufacturing - so maintaining current levels of supply will be hard enough, let alone catering for additional surge capacity as people seek to stockpile so that they can ‘shelter in place’.
2. Releiving the burden on health care providers during a pandemic
HCW will have their hands more than full dealing with a pandemic - the last thing they need is their patients arriving needing scripts for the meds, when they will be under seigie from pandemic patients. Additionally, HCW do not need ‘healthy’ individuals un-neccesarily exposing themselves to individuals who may be ill with flu - this will just increase patient numbers and add to their burden.
The Problem
Stockpiling essential medications is important to avoid un-neccesary deaths, and to releive pressure on HCWs in a pandemic; this should be an open and shut situation, but there are big issues here. In the US, MedicAid and insurers generally are not (as far as I am aware) willing to fund the upfront payment of additional meds for say 6 weeks or 3 months (I personally feel that 3 months supply is needed) as part of preps - it upsets their budgets and cash flows. The long term sick often do not have funds avaialable to wholly fund purchase of their own prescriptions. In the UK, no additional funds have been made available to the hospitals, PCTs, doctors surgeries etc for stockpiling of medications or other supplies, nor to provide three month prescriptions to patients - and I am fairly sure that this pattern (or a variation of it) is being repeated across Europe. Where private individuals wholly pay for their medications there is unlikely to be a problem, but, no matter which health system we are looking at in the world, most have some form of insurer, insurance or state payment system involved that has not provided funds for this preparation to take place. Therefore this is probably the most vulnerable pandemic preparation, and one where the best efforts of the individual may fail to secure a result.
What can we do?
We are all stretched on time here at Fluwiki, squeezing in our contributions here around our other commitments - so we need help.
Patient Associations are groups with established lobbying capabilities, are not shy of running head to head with insurers and similar, and are entirely devoted to campaigning for the well being of their members; they are ideal partners.
Therefore, I would propose that we 1. Brainstorm and research a list of medical conditions, their patient groups and associations here and in the UK and Europe.
2. Formulate a letter, highlighting the issues, and setting out clearly why patient groups need to start communicating the issues to their members and, where necessary, use their lobbying machinery to secure the necessary funding and co-operation of HCW to write additional scripts and for insurers or providers to make the necessary funds available etc. Where they do not receive satisfactory responses, we need the Associations to highlight the issues that may be faced by their members ( and the reasons for them) to the press.
3. Send out the letter, and keep assoications updated - perhaps we could start a dedicated patient association thread or somehting like this.
This proposal is too big a job for an individual to do - but as a collective group, working over a period of time, it can be done - take a look at the fantastic acheivements of Pandemic Awareness Week and what has been done there by all of you. We can do this.
If we are willing I would like to start a seperate brainstorm threads for us to thrash out a list of groups and contacts for each continent - We need a list for the US and Americas, one for Europe and one for Asia if we have participants from there: we will need a contact name for each organsiation, an e-mail address or a snail mail address if this is not availble. We then use this thread to formulate and develop our letter, and for comments on the same.
How does everyone feel about doing this?
This idea is great. It links health care workers with patients and families. It highlights the need to be proactive in a very personal way. It can be directly helpful immediately.
Suggestion: Let’s start with diabetics first.
Diabetics are numerous, more or less homogeneous in requirements (ok, different non-insulin drugs and a few insulins), and often well organised regarding self-care (they administer insulin to themselves, check for symptoms, etc). Also, many of the diabetics are children and teenagers, an age group H5N1 seems to favour (sorry to remind us!). Many people will immediately see the point regarding other chronic diseases (hypertension, depression and anxiety, etc). Maybe there’s a way to link that with community preparedness in that people can tutor each other the way many diabetics do.
This is the time to think about other options (maybe insulin is difficult if it depends on freezers and therefore on the electric grid). In parallel, we need to look deeply into the chosen group (diabetics or not).
Also, some diabetics can do without their meds, at least up to a point. Self-resilience would be part of the plan.
All in all, this is a great way to make the invisible visible (and to start preparing as communities of interest): why a pandemic would hurt us all.
Flumonitor - thanks for this thread!
Power is likely to be intermittent, but there are fridges that can be small enough to be powered by batteries - enough to store Insulin. Best of all, we can get the patient groups to consider these issues by posing the problems and getting them to come up with viable and workable solutions. There is always a way around every problem - and even if issues are severe - as they may be in this case - it means that there is yet greater need for public debate of the issues so that solutions can be found!
Other chronic therapy areas to consider where death is a serious risk if medication is unavailable: Chemotherapy where there is long term ongoing treatment (breast, prostate,???? cancers) steroid therapy for persons with autoimmune disease, asthma therapy, thyroid replacement, GTN and heart meds (especially angina), antihypertensives, treatments for epilepsy. There is stuff missing here - what can anyone else think of?
PS thanks lugon for your comments, and agreed, diabetes is probably a good place to start, although one that may pose the most problems.
Could anyone who wishes to input on this global project please volounteer - lugon is also right that we will need to do some research, and we will need to taylor approaches to differing organisations slightly too - so i would like to divide and conquor! If we can define exactly what work needs to be done and then allocate projects to our volounteers according to their skillsets, we can acheive this without it being a massive burden for any one individual.
Many thanks to everyone in anticipation…
May I suggest that someone start a wiki page to collect contact info for all the different patient support groups?
Good idea! If there was a icon to use at this point however I would opt for the (hide face behind hands)one here - I will need to defer to Lugon or another on this occasion! How do we start a wiki page?
Easy and done.
As for associations - google is our friend.
For the diabetic association, it certainly wouldn’t hurt to enlist the help of their very high profile spokescelebrity, Mary Tyler Moore.
2beans - good idea to get some media worthy individuals involved if we can.
For the UK see http://www.patient.co.uk/selfhelp.asp for a FULL directory of all patient groups - some work to do extracting the right info however. Perhaps we can all elect to take different categories?
BB’s posting above looks out of context - probably meant for another thread :)
also, not above but below - nice trick, hey?
i’ll go for diabetes
Ill start with cancer
BUMP - anyone out there wanting to take on US patient association groups?
Some contact info -sorry I didn’t start another page-
AFSP (USA)
NAMI (USA)
BPDWORLD (UK)
La Leche League International (not quite the group you had in mind here, but, “information and support to breastfeeding mothers” and women of reproductive age with small children at home would be vital before an influenza pandemic.)
crfullmoon, La Leche! Good!
If we draft the letter, many people will re-shape it and send it without us knowing it. So maybe we want to focus on the letter first? The main points are stated. Anyone wants to have a go at phrasing it? Just blurb it out!
It might be a good idea to cc the letters to each patient association to the pharmaceutical and/or medical supplier applicable thereto: COPD association and medical oxygen distributor association, e.g.. The associated suppliers may have an idea or two as well.
2beans – at 07:03 It might be a good idea to cc the letters to each patient association to the pharmaceutical and/or medical supplier applicable thereto: COPD association and medical oxygen distributor association, e.g.. The associated suppliers may have an idea or two as well.
Yes, that’s a good idea. The suppliers need to start increasing their stock.
On the insulin issue, test results are needed for how long the insulin remains “good” when stored at various temperatures above 40 F. I’m thinking of the clay pot within a clay pot cooler that in dry climates could keep it at 65 F or so during the summer, or a cool basement or other in-ground structure.