Access to heath care and treatment is a global concern for all those with chronic, life threatening heath conditions; probably even more so for those people living with aHUS.
The alliance “white paper” (click here) about the inequities of treatment access as revealed by the 2016 Global aHUS Survey illustrates the difference between 23 countries , the wider picture is probably even more diverse.
When it comes down to it heath care provision can be left to the free market for service provision and how people themselves provide for the risks of ill heath ; or handed over to the Government to decide and make social care provision. In practice, however, few countries, if any, are wholly one or the other but there is a mix of each approach in a spectrum between one or the other extreme. Comparative global healthcare systems is a study in its self.
The Rare Diseases Day Video question by Erica of Royerford Pennsylvania is about the USA , and Erica asks “What happens to us if the ACA ( affordable care act) is repealed?
USA citizens without doubt get better funding for healthcare than other countries . But also the USA spends more on health care ( about 17% of its Gross Domestic Income) than most western countries let alone those in the developing world.
Around 85% of Americans have some form of health care insurance, paid for by individuals and/or their employees. That leaves 83 million or so of the population who are uninsured, including the elderly , disabled , children , veterans and some of the poor, to rely on public access to emergency health care provided for by Federal Law. Care is given by several Government funded programmes like Medicare , Medicaid , Veteran’s Association , Indian Health and others.
Americans have no right to heath care under their Constitution, although the unalienable rights of the Declaration of Independence of Life , Liberty and the Pursuit of happiness might prove trickier with out it.
So Statutes or Acts determine the rights of citizens to healthcare provision.
Perhaps the best known Act in recent times has been the “ACA” or “Patient Protection Affordable Care Act 2010” to give it its full title or “Obamacare” as it is much better known around the world.
The ACA eradicates a number of discriminatory policies about age, gender or pre-existing conditions, elimination of financial caps to the cost of treatment , extending the scope of care for those who rely on public funding including seniors , a government heath care insurance plan with common cover, providing speedier right of appeal to decisions and preventing insurance companies hiking prices without justification. ( More information about Obamacare can be read here)
With the recent change in administration in the USA Government there are increasing concerns that there will be a repeal of the Act in full ,or in part. If it happens those with aHUS may face receiving less care, or it may cost them more.
The reason for a Repeal of the Act boils down to affordability , USA Government funds 50% of health spending. This is something the rest of the world are all too familiar with, and which aHUS patient advocacy groups are active in making the case that complement inhibitors like eculizumab can be more affordable than appears to be the case.
Research action is needed to bring together all the evidence that will demonstrate not just the clinical effectiveness ; but also the cost effectiveness which makes complement inhibitors more affordable care for aHUS.
I guess in the States it is up to people like yourself Erica to lobby with others to retain rights as well as all the good that ACA has brought for aHUS patients; and, in doing so, you are joining the rest of the world in its challenge too.
Post script : which is what aHUS people in the USA did supporting a campaign of #Iamapreexistingcondition
by joining together in a video which can be seen here