Showing posts with label Hepatitis C. Show all posts
Showing posts with label Hepatitis C. Show all posts

25 March 2022

SHAFTED how disabled people found themselves on the front line

 How Disabled People Were Singled Out as part of the Austerity Offensive

SOCIALIST DISABILITY GROUP MEETING

Register here:

https://us02web.zoom.us/meeting/register/tZYpdemgqD0qHtC2Q-lBqGAVoJCAAKZMLXf3

The Socialist Disability Group (SDG) is holding an online meeting on Friday 25 March called “SHAFTED  — how disabled people found themselves on the front line.”

Disabled people have been the main sufferers of the pandemic, of the austerity that came before it and generally of government policies. Now, new legislation will cut benefits, make it more difficult to apply for help and cut many off from vital NHS services through privatisation and enormous waiting lists. This can not go on. As Christine Tongue of the SDG and the meeting’s organiser said:

We have to take action. We need a bold, grassroots fightback which will make our presence visible. It’s too easy for the world — especially politicians — to ignore people with disabilities. We’re not going to let that happen.

The main speaker at the meeting will be Paula Peters of Disabled People Against the Cuts, a group known for taking direct action and mounting imaginative protests.

But a special feature of the event will be contributions from the floor. Christine said:

We will have members of our network telling their own stories and saying what they would like politicians to do about their problems. But able or disabled, we welcome all to this meeting.

Disability and illness is a lottery.  Anyone can get it. The point about a civilised society is that we recognise that we have a duty of care to those who fall victim to disability.

My first experience of disability was when I was told I had Hepatitis C in 2012. I went on to experience chronic liver disease and cirrhosis of the liver. I had had hepatitis for 20+ years. I was however lucky in the sense that new non-interferon treatments were coming on stream.

Interferon, which was the only method of treating Hep C previously is an extremely toxic drug.  I was first treated with it in 2013, along with 2 other drugs, and after a couple of months I discovered that although it was killing the virus it was also killing me.  I spent 18 days in intensive care as a result.

In the summer of 2014 I was one of an initial 500 people nationally, part of a special government programme, who were judged to be the most sick, who were put on the new Harvoni treatment. You had to take 1 tablet a day for 3 month.  Each tablet cost $1000 dollars even though it cost $1 to make. As Gilead Sciences, the company which made the drug freely admitted, they were charging what the market would bear, even though their pricing policy meant that thousands of people died as a result. What was worse was that most of the research for the drug had been carried out at Cardiff University. This is capitalism at its rawest. See Big Pharma Prepares to Profit From the Coronavirus 

From 2013 to 2015 when I had a liver transplant I experienced what it was like to be old and frail. Taking more than a few steps was an effort. Walking to the shops was an ordeal. Taking part in political protests was simply impossible and I had to withdraw from the Sodastream protests that Brighton PSC were engaged in.

My first consciousness of what it was like to be disabled though was when I was Vice-President Welfare of Brighton Polytechnic Student Union, some 45 years ago! Disabled students who felt left out by the union suggested that the best way of understanding what they experienced was for me, as the responsible official, to navigate a campus in a wheelchair. Falmer was chosen as it was the most hilly.

It was an eye opening experience to realise the difficulties in reaching for handles that were too high or doors that were too heavy to open or steps that made even getting into a building difficult. Toilets were even more of an obstacle.

Things have improved since that time. Then disability toilets were the exception.  Automatic doors had not yet made an appearance. Ramps instead of or in addition to stairs were very much the exception.  But if some of the worst obstacles have been eliminated (& see Christine Tongue’s article for the Isle of Thanet News below) then the attacks on disabled people’s right to a decent living have not abated.

People won’t remember that in the 1970s there was no disability discrimination legislation. That was only introduced under John Major’s government as a result of our membership of the European Union. And the first Act was made as weak as possible. It was, for example, possible to justify both direct and indirect discrimination on grounds of cost whereas today direct discrimination can never be justified. The same was true when age discrimination laws were introduced.

Disability benefits have been under attack ever since the introduction of Disability Living Allowance in 1992, which unified all previous disability benefits and extended them to those with mental health difficulties. DLA was a good benefit because it was not means tested and because other earnings were disregarded. That was why it soon came under attack from New Labour. A campaign by the Daily Mail and the tabloids was launched against ‘bogus’ disability claimants who we were told were bankrupting the country.

All Work Tests were introduced run by companies such as ATOS with the clear purpose of getting as many people as possible off benefits. Incapacity Benefit was abolished by New Labour and towards the end of the Labour Government a Green Paper was issued by the Health Secretary Andy Burnham which floated the option of abolition of DLA for the over 60s (after all getting old means getting infirm!) or at the least abolishing Attendance Allowance. Burnham himself refused to deny that these options were on the table.

It was New Labour that set the scene for the Cameron Government and Ian Duncan Smith’s attack on the living standards of claimants generally and disabled claimants in particular. Introduced by the 2012 Welfare Reform Act it was a replacement for DLA for all those above the age of 16. It was meant to cut the cost of DLA by 20% whereas in fact it has risen.

Now that the COVID pandemic is considered by the government to have gone away (which it hasn’t) we can expect further government attempts to cut and restrict disability benefits as they embark on a new period of austerity.

Below is a lightly edited article by Ellen Clifford in Tribune in November 2020 and an article by Christine Tongue, of the Socialist Disability Group and a Steering Committee member of the Socialist Labour Network.

Tony Greenstein

Britain’s War on Disabled People

Ellen Clifford

In 2016, the UN said austerity had created a ‘human catastrophe’ for Britain’s disabled — but the last decade has also seen unprecedented organising to fight back.

Top of Form

Bottom of Form

Top of Form

Bottom of Form

Prior to 2010, the UK government was known as a world leader on disability. A decision was made under the Coalition government and carried forward by successive Conservative administrations that this progress had gone too far. This marked the first time in the history of modern social policy that things went backwards for disabled people. This was done in order to make disabled people pay for a financial crisis that they did not cause. It needed to be concealed from the public. The way in which right-wing politicians and the media achieved this was by creating a narrative that blamed disabled people themselves, purposefully stoking fires of division and hatred.

What the government did is one half of the story. The other half is the resistance mounted by disabled people themselves. If the Tories imagined that disabled people would be easy targets for their brutal cuts, they were wrong. Again and again, the government was forced into U-turns and concessions. These discrete wins along the way have not been able to halt the overall regression in material conditions for disabled people, wiping away the hard-won gains of generations of disabled campaigners before us. After more than a decade of tireless resistance against austerity and welfare reform, the odds against us have grown even greater.

Targeting Disabled People

In 2016, the UK became the first country in the world to be found guilty of grave and systematic violations of disabled people’s rights. This was the finding of an unprecedented investigation by the UN Disability Committee into the impacts of welfare reform and austerity measures. What was of concern was the rolling back of the rights of disabled people, driven forward, the inquiry revealed, by deliberate legislative and policy choices.

Regressive measures, badged as government ‘reforms’, were pushed through by the Coalition government in the face of sustained opposition. As a consequence, disabled people experienced negative changes within all areas of our lives. In 2018, the Equality and Human Rights Commission warned that

‘[d]isabled people are falling further behind in many areas, with many disparities with non-disabled people increasing rather than reducing’, and they called on the government to urgently adopt an ‘acute focus on improving life in Britain for disabled people’.

Measures implemented in the name of austerity and welfare reform have had a disproportionate impact on disabled people. This was the truth behind David Cameron’s lie that ‘we are all in it together’. Cuts to benefits (excluding pensions) and local government made up 50 per cent of the 2010 austerity plan. Disability and carers benefits make up about 40 per cent of non-pension benefits and social care makes up 60 per cent of local government expenditure. Thus, the decision to target spending reductions in these two areas automatically led to extensive cuts to income and services for disabled people.

The combination of cuts in benefits and services was found to hit disabled people on average nine times harder than most other citizens in research carried out by the Centre for Welfare Reform. For disabled people with the highest support needs, the burden of cuts was found to be nineteen times that placed on most other citizens. Contrary to the government’s repeated claim to be ‘protecting’ and ‘targeting resources’ on ‘the most vulnerable in society’, the cuts were effectively aimed at disabled people.

At the same time, decisions were made to benefit the rich and help households with the highest incomes. A 2019 report from the Fabian Society identified how changes to tax and benefit policies since 2010 have contributed to Britain’s crisis of inequality, revealing that the government is providing more financial support for the richest 20 per cent of households than the poorest 20 per cent.

Human Catastrophe

Evidence before us now and in our inquiry procedure as published in our 2016 report reveals that social cut policies have led to a human catastrophe in your country, totally neglecting the vulnerable situation people with disabilities find themselves in.

– Theresia Degener, chair of the United Nations Committee on the Rights of Persons with Disabilities

These words were addressed to representatives of the UK government during the concluding session of a routine public examination of the UK under the United Nations Convention on the Rights of Persons with Disabilities. It took place less than a year after the government dismissed the findings of the committee’s special investigation.


Death and suicides linked to cuts and benefit changes are the most extreme example of the human cost of austerity and welfare reform, but there have been many other terrible impacts, including rising poverty, food-bank use, debt, survival crime, and homelessness, in addition to dramatically escalating levels of mental distress. A study by academics from Liverpool and Oxford Universities published in 2015 found that reassessments for Incapacity Benefit from 2010 to 2013 were associated with an extra 590 suicides, 279,000 additional cases of self-reported mental health problems and the prescribing of a further 752,000 anti-depressants. Victims of welfare reform who have died or taken their lives as a direct consequence of benefit cuts are now a common item on daily media coverage.

Legislation and policies that have inflicted such suffering have also largely failed to deliver their stated aims. The transition from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) was intended to save 20 per cent compared with DLA remaining in place, but it appears to have cost around 15 to 20 per cent more. A report from the Office for Budget Responsibility published in January 2019 estimated an overspend on the DLA/PIP budget of £2 billion, leaving an estimated £4.2 billion shortfall when compared to the original savings target.

On a societal level, cuts to local authority budgets threaten disabled people’s continued existence in the community alongside non-disabled people. Funding cuts to education and social care and a failure to invest in accessible social housing are leading us towards physical re-segregation and institutionalisation. Alongside this, there has been a fuelling of attitudes that ‘other’ and thereby marginalise disabled people: on the one hand, growing disadvantage, resulting from cuts to state-funded support and leading to greater reliance on charity, has encouraged a pitying view of disability; on the other, hatred and hostility towards disabled people have been enflamed by anti-benefit-claimant rhetoric used by the government to justify welfare reform.

Political Fallout

A government does not attack its own citizens en masse without consequence. The impacts of austerity and welfare reform on disabled people have played a significant but overlooked role in the political upheaval of the last ten years. In terms of retaining control of Westminster, the Tories were largely correct in their assumption that — as Iain Duncan Smith observed — ‘[disabled people] don’t vote for us’, and thus that their attacks on disabled people would not affect their chances of re-election. Nevertheless, Cameron’s miscalculation on the EU referendum can be attributed to his failure to adequately understand the impacts of his policies and the bitter anger towards anything regarded as ‘establishment’.

Welfare reform has politicised large swathes of people. Experiences where individuals have their benefits stopped are obviously traumatic for those affected, but all benefit claimants are now subject to a benefit assessment approach which is personally humiliating. Trauma, confusion, and anger can turn to demoralisation and distress, but they can also lead to politicisation and activism. Research by the University of Essex and Inclusion London found that, in order to make sense of their situation, claimants came to think about their difficulties within the context of politics and Tory attacks on disabled people. Those who adopted an attitude of resistance towards the system and/or became politically engaged were better able to restore a sense of self-esteem that had been taken from them by their interactions with the Department for Work and Pensions (DWP).

Issues affecting disabled people have the potential to cause far greater social upheaval than the public and political profile of disability suggests. Disabled people make up 22 per cent of the population, a figure that is often underestimated. We are geographically and generationally dispersed across the population. Issues relevant to us also affect our friends, family, neighbours, and the range of workers whose jobs are linked to disability. Lack of recognition for the social significance of disability issues within politics and the media reinforces in those experiencing them the idea that their lives are not valued by those in power, making them hungry for a change from the status quo.

Forefront of the Fightback

With the Disabled People’s Movement (DPM) in decline from the mid-1990s, resistance from 2010 onwards can be characterised as a return to grassroots activism. In a conscious departure from the identity politics era of disability campaigning, new groups such as Disabled People Against Cuts (DPAC) were set up with the explicit aim of building alliances and joining the wider anti-capitalist movement.

One of the ways in which the British government was able to get away with making war on disabled people was by the sheer volume and complexity of the measures they unleashed. Where disabled people and their allies succeeded in holding them back was through intense and varied activity operating on many fronts and involving many people, each making an invaluable contribution in their own way. Resistance has used every tool at its disposal — from research, lobbying, protests, endless legal challenges, awareness-raising, and direct action. Collectively, the stakes are too high to give up and give in.

Since 2010, campaigners have won significant victories such as forcing Atos, a global corporation with a revenue measured in billions, out of its contract to deliver the Work Capability Assessment.  The government has been free to ignore the UN disability committee findings but it was a considerable achievement for grassroots disabled activists to secure the unprecedented special investigation that took place from 2015–16. The findings served to validate the experiences of millions of disabled people under attack from their own government. The government’s failure to slash the DLA/PIP budget can be attributed to the hard work of campaigners, claimants, advisers, and public lawyers who have consistently resisted attempts by the DWP to introduce measures limiting eligibility for the benefit.

Disabled activists have been at the forefront of the anti-austerity movement. Despite our efforts, the direction of government policy is further regression of disabled people’s living standards. One of the impacts of this is that it is becoming harder for disabled people to mobilise resistance.


The War Goes On

In December 2019, the most right-wing government in modern British history was re-elected with a significantly increased majority.

This was disastrous news for disabled people. Under Boris Johnson, the Conservatives now had the parliamentary power not simply to carry on in the same direction with the continuation of policies that have spread inequality, poverty, and immiseration, but to ramp up their attacks and implement welfare reform measures that they were previously beaten back from achieving.

An early indication of what the election result meant for disabled people was the decision announced in the New Year’s honours list to award Iain Duncan Smith a knighthood. Duncan Smith had not held a ministerial appointment since his period as secretary of state for work and pensions from 2010 to 2016. The honour effectively endorsed the dismantling of the social security safety net over which he presided. It also suggested full government commitment to rolling out Duncan Smith’s big idea, Universal Credit, in spite of the well-evidenced harms it has caused.

Into this picture, we then had the Covid-19 outbreak. The pandemic exposed existing inequalities within society even more starkly than a decade of austerity and welfare reform had. Disabled people were at the same time most at risk from coronavirus and also largely ignored in official responses to the pandemic. At a time of great uncertainty and anxiety, disabled activists and health workers had to challenge NHS guidelines that stated that disabled people were not a priority for life-saving treatment. Two thirds of deaths from coronavirus in the UK are disabled people. Between 15 March and 2 May, 22,500 disabled people died from Covid-19 compared to 15,500 non-disabled people.

Campaigners suspect that Boris Johnson’s original strategy of seeking to create ‘herd immunity’ and the government’s failure to do more to protect disabled people was part of a deliberate plan to remove from society those whose lives are deemed to represent a cost burden on the state. This is not inconceivable. Both Johnson and his close adviser Dominic Cummings have expressed views described by researcher-activist Roddy Slorach as ‘textbook examples of eugenic opinion’.

Speaking to city bankers during his time as mayor of London, Johnson said:

Whatever you think of the value of IQ tests it is surely relevant to a conversation about equality that as many as 16 per cent of our species have an IQ below 85 while about 2 per cent have an IQ above 130 … the harder you shake the pack the easier it will be for some cornflakes to get to the top. And for one reason or another — boardroom greed or, as I am assured, the natural and God-given talent of boardroom inhabitants — the income gap between the top cornflakes and the bottom cornflakes is getting wider than ever.

Inequality is a state that Johnson and Cummings both regard as natural and even desirable for the functioning of society. It is nevertheless important to remember that the war against disabled people cannot just be attributed to individual ministers or Tory governments. Its existence is bound up with the intrinsic relationship between disability and capitalism.

What has happened since 2010 is a sharp reflection of the fundamentally important role that the category of disability plays within capitalist political economy, where it serves to identify the less productive members of society and enables a ‘weeding out’ from the rest of the population. Interrogating the relationship between disability and capitalism is a powerful way to expose the inequalities and cruelty of the system of exploitation under which we live. It is no wonder then that disability issues are so hidden and misunderstood within mainstream society: they need to be shrouded in myths and misconceptions in order to obscure the true nature of capitalism.

Those of us who want a fairer world must fight for improvements in the living conditions of disabled people as part of — not in isolation from — the rest of the working class. But our resistance must also be consciously situated within the struggle to transcend capitalism itself. Only then can we guarantee freedom from oppression and a society where diversity is truly valued.

Opinion with Christine Tongue: Mentioning the unmentionables

Look away now if you feel squeamish about talk of lavs, pants and pads and toilet issues in general.

My friend Mandy who has an undiagnosed neurological problem,  said to me “I sometimes can’t do two things at the same time. Standing up from the loo and pulling up my pants was just too much today. I fell flat on my face — hence the new bruises!”

My friend Sue, wheelchair user, has to use incontinence pads at night when getting to the loo involves hoists and transfers to a special bathroom wheel chair. But the pads she could get free from NHS supplies are not comfortable or adequate. She has to buy her own. A large weekly expense.

Some disabled people have catheters into their bladder —you pee into a bag beside your bed. It’s convenient but leaves you prone to infection.

I’m not at that stage yet, but with my failing legs and painful back, going to the loo is now a much more difficult process. Social services have provided metal surrounds and raised toilet seats for my home. But going outside your house is a minefield.

I’ve just had to get my long suffering partner to carry one of my toilet frames to a friends house. Last time I used his loo I nearly fell over trying to hold onto his bath and a door handle —the door opened, I lurched into the cupboard etc etc. You get the picture….

Why aren’t all houses designed with potential disability in mind. Whose mad idea was it to put in low toilets in modern bathrooms with no grab rails around them? Most people are taller than me so have a long way to haul themselves up from a low seat.

But public loos are not ideal. They may have wheelchair on the door but it doesn’t mean all disabled people can use the space.

The disabled loo in Broadstairs harbour needs a “radar” key to get in —just in case you able hooligans go in and use it for antisocial behaviour I guess. It’s a kind of master key for most disabled public loos. Nothing electronic about it and anyone can buy one. But for me, even though I now have a radar key I bought on the internet, I would have to stand outside, reach for my key, put my sticks in one hand, or prop them up on the wall in order to use the key. Mandy might have fallen over by now.

You get inside and need to lock the door. Another balancing act. But oh joy, two bars on each side of the loo to grab and lift yourself up with. I wonder how others get on with washing their hands. For me it’s another balance problem with no stick to lean on and sometimes a distance to the hand dryer.

The other disabled loo at Broadstairs bandstand doesn’t need a key and is easy to get into on my scooter — which gives you a safe stable object to hang onto. Which you need because there’s a lack of grab rails and the hand dryer is the other side of the room from the sink. Take a clean hanky and give it a miss is my advice.

People using the dryer will inevitably  drop water on the floor. A wet floor and sticks is not good! Which is why I like to take the scooter in with me. I can’t risk slipping. My bones are rebellious enough without shaking them up sliding on a wet floor.

What I’m talking about is often down to basic design. You won’t fall over if you have a grab rail in the right place. If you need pads and special pants let’s make sure the people who need them get the best available. As for public lavs, let’s make them accessible, clean, safe. Not locked! Why not?

 

26 July 2019

Life And Debt: Stories From Inside America’s GoFundMe Health Care System


The Creeping Privatisation of the NHS – Brighton and Hove CCG is Forcing Patients to Buy Medicines Rather than Prescribe Them


  
You may remember that line from Joni Mitchell’s Big Yellow Taxi
You don’t know what you’ve got till it’s gone.’
That applies like nothing else to the NHS.  People take for granted being able to turn up at a hospital if they have a problem or get ill.  We take it for granted being able to obtain a GP’s appointment.  We don’t know what it is like to face the agonising decision of whether we can afford to go to the doctor or afford to buy the medicines he has prescribed.  Yet that is the ‘logic’ of the free market.
With Donald Trump promising that in a US-British trade deal ‘everything is on the table’ including the NHS, then it is worth having a look at what the free market in health is like in the United States.
A comment piece I did for the Brighton and Hove Argus some years ago on Big Pharma
After all the ideology of the market is that everything has its price, everything is a commodity, health included. No one has any social responsibility or duties towards another. If you can afford it then the world is your oyster but if you can’t, then that’s tough. Everyone has the right to starve and sleep under the stars but it just happens that only the poor and homeless take advantage of these ‘freedoms’.
As RH Tawney put it ‘freedom for the pike means death to the minnow.
In the United States ‘freedom’ includes the right to die without treatment and of course the right to buy virtually any treatment you want and to jump the queue whilst doing so.
Below is a shocking article on how thousands of Americans are having to resort to crowd funding to pay for health care. Billions of dollars have been raised to pay for what we take for granted. Whole communities rally round to raise the funds necessary to pay for someone’s cancer treatment because even when someone is insured, there are ancilliary costs that are not covered.
There is a reason why every newspaper hates Corbyn - and it isn't 'antisemitism'
However those who don’t have a community to rally round them, the homeless and forgotten, are left to die unaided. And the ‘Christian’ politicians who call themselves ‘pro-life’ as they prohibit abortions, because the death of the unborn so distresses them, are unmoved by the death and suffering of those who cannot afford medical care because they cannot afford it.
When I learnt that I had Hepatitis C 7 years ago, I was fortunate in more ways than one. I was unable to cope with what was the then standard treatment of being injected with a toxic drug called Interferon.  Although it was curing the disease it was killing the patient!
I was lucky because at that very moment new experimental non-interferon treatments were coming on stream. A drug called Harvoni was being marketed by an American drug company called Gilead Sciences. I took this drug for 90 days. One pill a day after which I was cured. But without the NHS I couldn’t have afforded it because it cost about $1,000 a pill.  It cost $1 a pill to make.  An obscene level of profit.
I was lucky because I was one of the 500 sickest people with Hep C who were on a government funded programme to pay for this drug on the NHS.  I was the first person my consultant told me in Brighton and Hove.
The drug was developed primarily at Cardiff University but Gilead Sciences got the patent and they charged what they admitted ‘the market would bear’.
There is a brilliant cross-examination by Alexander Orcasio-Cortez, the socialist Congresswoman from New York who Trump particularly hates and who was recently told to ‘go back home’ despite having been born in the USA.  In the same speech Trump accused the Congresswomen of ‘anti-Semitism’.

In the video we see the hapless Gilead representative face the accusations that they are charging $2,000 for Truvada, an HIV drug, in the US whilst it costs $8 in Australia. Big Pharma has no morals.
My complaint to the Brighton & Hove CCG

I mention all this because the Brighton and Hove Clinical Commissioning Group has decided on a policy that any drug that can be purchased over the counter is no longer going to be available on prescription.  It doesn’t matter what it costs, you will not be able to get it. It would appear that it does not depend on what your ailment is either. This is in order that the CCG can ‘save’ approximately £500,000, absolute chicken feed.
The cost of drugs in the US is one of the main ‘extras’ that insurance tends not to cover so it is an important principle that if your doctor believes that you should be prescribed a drug it’s not for the faceless bureaucrats of the CCG to determine whether or not you will be ‘allowed’ it.
I have made a formal complaint and I have threatened that if necessary I will seek to apply for a judicial review of the decision.  However this is not just peculiar to Brighton and Hove but is a national policy. The NHS may be safe with us, as the Tories claim, but one thing is for sure.  Given half the chance they would like to adopt the American system of super profits for private health care companies and an insurance lottery for the rest of us whereby the insurance company will decide whether or not you need the treatment you have been prescribed and how much they will fund.
One statistic has always caught my eye.  Cuba, which has a universal health care system, has a lower child mortality rate than its wealthy neighbour because the United States prefers to spend its money on weapons systems than on the most basic needs of its citizens. And it has a President whose job it is to get the poor to fight amongst themselves, ‘making America great’ in order that the rich can get away with it.
And that is also what the attacks on Corbyn and the ‘anti-Semitism’ moral panic is about. Protecting the wealthy here from those who would like to redistribute their ill-gotten gains.
Tony Greenstein

The human body is a frail thing, and illness is a pitiless adversary. Every day, an untold number of Americans are diagnosed with a devastating illness or suffer a sudden injury that threatens to upend their lives and tear apart their families.
This misfortune often comes at a staggeringly high financial cost that can be just as cruel.
While health insurance or government programs like Medicaid and Medicare can shield against huge medical bills, massive debt and even bankruptcy, only the truly wealthy can feel secure that sickness won’t lead to financial ruin.
This is why thousands of Americans have turned to crowdfunding website GoFundMe in the last decade to help cover medical bills and related costs. HuffPost is profiling some of those people, and what their stories reveal about the shortcomings of the American health care system.
These are not feel-good stories.
That’s often how the news media cover these fundraisers ― focusing on the generosity of individuals giving rather than the systemic failures that created the need. While it’s hard not to be inspired by successful campaigns and the fortitude of those suffering through terrifying ordeals, such stories portray a chilling reality that Americans ― even those with good jobs and health insurance, can be one bad day away from financial ruin.
A serious disease can put financial strain on people even in countries with universal health care systems and strong safety nets. But the United States, which has neither of those things, leaves its residents uniquely vulnerable. 
More than 50 million donors contributed more than $5 billion to GoFundMe campaigns between 2010 and 2017, according to GoFundMe, which is based in Redwood City, California, near San Francisco.
Two years ago, one-third of all the money raised went to campaigns listed in the Medical category. GoFundMe reports that more than 250,000 medical fundraisers are added a year and raise $650 million annually.
Although the fundraising numbers offer a sense of the need behind the many campaigns, they are imprecise, according to GoFundMe. Users can choose whatever category they like, so not all medical fundraisers are actually for medical bills and related costs, and some users seek help for those things in other categories on the website. Those figures also include money raised in other countries.
Successful fundraisers can generate $100,000 or more, as neighbors and strangers alike rally around families in need, and that money can go a long way to ensuring that treatments can continue, that housing and other daily costs can be covered and that families don’t lose everything while trying to keep loved ones alive and make them healthy.
ISABELLA CARAPELLA/HUFFPOST
Americans pay more for their health care than their counterparts in other developed countries. And even though more than 90% of Americans have some form of health coverage, according to a federal survey from 2017, it’s often inadequate. Some 45% of Americans are “underinsured,” according to a report published last year by The Commonwealth Fund, a New York-based think tank. And 27% of Americans told West Health and Gallup they had skipped medical care because of the cost in the past year in survey findings published this year.
High deductibles requiring thousands of dollars of out-of-pocket expenses before the insurance covers any bills, large copayments at the point of service and costly prescription medicines are among the reasons Americans pay so much. Add to that services or medicines insurance companies won’t cover at all, experimental treatments ineligible for coverage, medical providers that aren’t in insurance networks and other uncovered costs, and medical bills can rise into the millions of dollars. For the uninsured, there is no upper limit to how much they could owe.
According to data from the Federal Reserve Board, 40% of Americans don’t have enough savings to cover an emergency expense exceeding $400. In the past year, Americans borrowed $88 billion to cover medical bills, the West Health/Gallup survey found. Among Americans who declared bankruptcy from 2013 to 2016, 59% cited medical bills as a factor, according to a survey published in the American Journal of Public Health this year.
Illness often means lost income, as the patient and family members miss time at work during treatment. Transportation and lodging costs pile up for people who must travel long distances to receive care, including those in rural areas who live far from the nearest medical facilities and those who seek medical treatment from specialists who practice at prominent institutions like the Mayo Clinic in Minnesota or the Cleveland Clinic in Ohio. These so-called indirect expenses are a reason medical fundraising is the leading category on GoFundMe worldwide.
Browsing the Medical category on GoFundMe offers a brutal reminder that illness doesn’t discriminate. People from all walks of life and at virtually every level of income, both the insured and the uninsured, turn to their communities and to strangers on the internet to solve a financial problem that would be impossible to handle on their own.
No amount of charity is enough to compensate for America’s tattered and unforgiving health care system, as GoFundMe founder and CEO Rob Solomon articulated in an interview with Kaiser Health News published in January.
“The system is terrible. It needs to be rethought and retooled. Politicians are failing us. Health care companies are failing us. Those are realities. I don’t want to mince words here. We are facing a huge potential tragedy,” Solomon said. “We provide relief for a lot of people. But there are people who are not getting relief from us or from the institutions that are supposed to be there. We shouldn’t be the solution to a complex set of systemic problems.”