Have you heard the term catastrophic health expenditure or CHE before? You should have as many MSers and their families are exposed to catastrophic health expenditure.
CHE occurs when the spending on health exceeds a pre-defined percentage of a person’s or household’s capacity to pay. CHE has a massive impact on MSers’ lives and usually discourages them from using healthcare services and often leads to a reduction in the use of other essential goods and services. In summary, CHE exposes families of MSers to poverty and economic ruin.
In 2014 when I was visiting India on my sabbatical I remember meeting a relatively well-off woman with MS who was having to buy her weekly Avonex (interferon-beta-1a) injection one syringe at a time. She told me that if she couldn’t raise the money from family and friends she would simply miss that week’s injections. Her neurologist told me that she was from quite a wealthy middle-class family and that her MS had devastated their finances. Does this story sound familiar?
If you live in the UK or another country with a socialist healthcare system you are generally protected from CHE by having free access to healthcare and social safety net in the form of unemployment and/or disability benefits. However, if you live in a country with a healthcare system that is based on a fee-for-service private model with substantial out-of-pocket payments it is easy to see how MS can cause CHE.
Iran is a country with substantial out-of-pocket payments for health system financing. The study below shows that about 1 in 25 families with someone with MS encounter catastrophic healthcare costs. Importantly, the brand of DMT, housing, income and health insurance were significantly correlated with catastrophic expenditure. This is one of our motivations for forming a Grass Roots Off-Label DMT Initiative (GROLDI), which promises to lower the costs of treating MS in countries such as Iran by addressing the unacceptable costs of innovator DMTs in countries such as Iran. Iran is not even a good example as the government has at least allowed biosimilars and generics to emerge to try and lower prices of the so-called ‘innovator DMTs’.
Not surprisingly there is a literature of CHE in many low- and middle-income countries, for example, Brazil. Kenya, China, Nepal, Korea and India. But it is also a growing problem in countries such as the USA in the medically uninsured. Over 60% of personal bankruptcies in the USA are triggered by health crises. I sincerely hope you will agree that CHE is another reason why we need to move off-label DMTs up the political agenda and to push-back on Pharma’s influence to prevent off-label prescribing.
I am prepared to bet that if we studied the economic impact of MS worldwide we would find that MS is a common cause of CHE. Is anyone prepared to take on this challenge? How common is CHE in your country and how often is it triggered by someone in the family being diagnosed with MS?
Juyani et al. Multiple Sclerosis and Catastrophic Health Expenditure in Iran. Glob J Health Sci. 2016 Sep 1;8(9):53778.
BACKGROUND: There are many disabling medical conditions which can result in catastrophic health expenditure. Multiple Sclerosis is one of the most costly medical conditions through the world which encounter families to the catastrophic health expenditures. This study aims to investigate on what extent Multiple sclerosis patients face catastrophic costs.
METHOD: This study was carried out in Ahvaz, Iran (2014). The study population included households that at least one of their members suffers from MS. To analyze data, Logit regression model was employed by using the default software STATA12.
RESULTS: 3.37% of families were encountered with catastrophic costs. Important variables including brand of drug, housing, income and health insurance were significantly correlated with catastrophic expenditure.
CONCLUSIONS: This study suggests that although a small proportion of MS patients met the catastrophic health expenditure, mechanisms that pool risk and cost (e.g. health insurance) are required to protect them and improve financial and access equity in health care.
CoI: multiple
I am very lucky to live in a country with a benefit system and free healthcare. But with PPMS, there are no drugs to help me anyway.
Ocrelizumab is licensed and funded by NHSE for PPMS. which country do live in?
I’m in the UK. I’m not eligible for Ocrelizumab, as I don’t have active disease and I’ve had PPMS for at least 20 years now. I wouldn’t want to take Ocrelizumab anyway, to be honest. Progression is slow and I’m doing pretty well, very careful about diet, lifestyle, avoiding viruses, doing Pilates etc. etc. But I wish there were neuroprotectives.
Prof G, if you’re off to Pakistan then please contact the supermodel Iman Ali. She has MS and is on Twitter. She is a very good movie star there, too.
https://tribune.com.pk/story/1983439/4-iman-ali-opens-living-multiple-sclerosis-world-multiple-sclerosis-day/
https://www.instagram.com/p/ByD2biQHXy0/?utm_source=ig_embed
Not sure I have a reason to cold call her unless she can help with our GROLDI or #OffLabel campaign.
Think of it more of an ambassadorial contact in that she, hopefully, may further promote your campaign in myriad ways; both in south Asia and amongst the diaspora residing here and North America.
We need famous faces living with MS, Prof G. In the culture we live in nowadays, this will be a prudent move on your part.
Phew! I saw the title of the post and thought you’d dropped a bottle of Château Latour 2009 or that Mouse Doctor had withdrawn his application for early retirement.😁
I can’t afford such expensive wines 🙁
Thanks for this…….a catastrophe that I have withdrawn my retirment plans. Careful what you wish for. You’ll miss me when I’m gone……
As long as pharma are making their billions, and shareholders are getting their dividends, nobody really cares about the economic mayhem high-cost drugs cause. This is raw capitalism; it creates the lucky few who obviously won’t have MS and the poor or have nots.
Don’t be so hard on yourself Prof G count yourself lucky and fortunate to not have MS and to be ones of the haves.
Yep, I do consider myself lucky, but life is a lottery and things can change very quickly.
My father suffered from chronic renal failure and was on dialysis for 12 years before being fortunate enough to have a kidney transplant. Despite this he died prematurely at age 65 from complications of long-term immunosuppression. My father was lucky in that he had worked for a large multinational and had excellent medical insurance.
My youngest sister has a progressive fibrosing interstitial lung disease and is on 24-hour day oxygen. Her exercise tolerance is less than 20m and she has to sleep sitting up. She does not have private health insurance and is looked after by the state healthcare system in South Africa, which is unable to offer her the biological therapies she needs nor a lung transplant. She has been treated with several off-label treatments that are of unproven benefit for her condition because that is all there is. My sister and her family have suffered from catastrophic health expenditure; so I know what CHE does to individuals and families.
I often wonder if I am really that lucky and if I am when will the luck run out?
Just to say that I – and I’m sure many, many others – wish you the best of health.
Definitely.
Big Pharma CEO: ‘We’re in Business of Shareholder Profit, Not Helping The Sick
https://bluedistrict.com/valeant-pharmaceuticals-were-in-business-of-shareholder-profit-not-helping-the-sick/?fbclid=IwAR23OYna5nCsz-HtoN8o2u6sK2nOn2d9QUL9quIhiUg_DUmaHcSVc7bWojs
FDA approves $2M medicine, most expensive ever
https://medicalxpress.com/news/2019-05-fda-2m-medicine-expensive.html
For-profit dialysis provider charges private insurers four times more than government payers
https://medicalxpress.com/news/2019-05-for-profit-dialysis-private-payers.html?utm_source=nwletter&utm_medium=email&utm_campaign=daily-nwletter
Study reveals financial interests of patient organizations assessing NHS treatments
More than two thirds of patient organisations involved in assessing treatments for NHS use received funding from the maker(s) or a competitor of that treatment, yet decision makers were aware of less than a quarter of these interests, finds a review in The BMJ today.
https://medicalxpress.com/news/2019-01-reveals-financial-patient-nhs-treatments.html
Most Impressive Drug Launch: Roche’s Ocrevus
https://www.biopharmadive.com/news/most-impressive-drug-launch-roche-ocrevus-2017/510814/
Medical Marketing in the United States, 1997-2016
From 1997 through 2016, spending on medical marketing of drugs, disease
awareness campaigns, health services, and laboratory testing increased from $17.7 to $29.9
billion.
CONCLUSIONS AND RELEVANCE Medical marketing increased substantially from 1997 through
2016, especially DTC advertising for prescription drugs and health services. Pharmaceutical
marketing to health professionals accounted for most spending and remains high even with
new policies to limit industry influence. Despite the increase in marketing over 20 years,
regulatory oversight remains limited
https://www.ncbi.nlm.nih.gov/pubmed/30620375
🙁
The idea of free healthcare in the UK, yes it’s free to access but it’s not really free as UK tax payer’s pay national insurance to fund it. Plus some tax to fund it is raised through items we buy in the shops etc.
It might seem obvious in stating this but it’s important to remember it’s not given out free in the sense no charge whatsoever at any point.
Free at the point of need
https://en.m.wikipedia.org/wiki/Beveridge_Report
CoI I’m a Beveridge
The post says free access not free healthcare; they mean very different things.
It would be useful to perhaps have a post on how funding for the NHS is done, how the money is raised via national insurance contributions and other tax. What specific taxes such as which types of goods and services and how certain companies who pay very low tax don’t contribute much.
The reason why I mention this is because I do hear people discuss the NHS as free healthcare, not free at the point of need or access.
Netfix, eBay, Amazon, Google don’t pay enough or any tax. It surprises me how many pwMS buy vitamin D tablets from the third company mentioned above, as read on the MS Society forum. Even my MS nurses suggested buying them from that website. They are price matched at other retailers sites, so I go elsewhere.
Anon 8:09 below
Re post on how NHS is funded
🤔 bit beyond the scope of this blog?! 😉 try starting here:
https://en.m.wikipedia.org/wiki/National_Health_Service
Scroll down and click on ‘current issues’
Happy reading 🙂
I’m not sure wikipedia is a trusted source. Not academically trusted anyway, as anyone can update it.
I guess the questions related to this blog are: do pwMS, their carer’s, families really understand how DMT’s and other MS medications are funded through the NHS? Not the history of the NHS but how it is today.
Your tax also goes to the politian tring to figure out brexit
They give you some DMT in Russia for free. It would be home brewed interferon generics for starters. You’ll typically will have a very bad reactions for it so they change it to Iranian one which gave little reaction but would not stop the relapses. Next 2-3 years you will spend being switched from one interferon generic brand to another.
Then if you are lucky enough and your ms is really that bad they can put you on Tysabry. It is somehow sponsored by the manufacturer I heard, but not sure. BUT. There is a serious problem with continuity of delivering this medications. They can give you it for 2-3 months but than say oh we overrun our budget so we have no money for tysabry for you for next month or two. Just imagine someone in tysabry in this situation. And it is very typical, happens everywhere.
Apart from that you can go and find private practioner who would give you Rituximab for your cash. If you can find one proficient in that matters. Or simply buy ritux in pharmacy and shot yourself.
Apart from that other safety nets are merely nonexistent. Unemployment benefits, disability benefits… hahaha. With ms you are destined to complete poverty as time goes by.