Patients who live near a major medical center and have sufficient savings may find these fees affordable. But the poor, those living in rural areas, and those without family or social support may not be able to try drugs even if they want to. Others may not be eligible. in the United States, Black and Hispanic patients less likely to be diagnosed with Alzheimer’s in the early stages of the diseaseWhen they would be candidates for anti-amyloid therapy.
If the drugs have no net benefit for patients, then these disparities in access may not matter much in the long run. But focus on expensive drugs may make it harder to close more general gaps in dementia care Disproportionately underserved Alzheimer’s patients affected, In the United States, Medicare, the public health insurance program for seniors, does not pay for the caregivers that many Alzheimer’s patients need, and tends to do a poor job of integrating communities. people with cognitive deficits, They are solvable problems, but there is little energy to address them. “There’s something enticing about the idea of ​​a pill or tea,” says Emily Largent, a bioethicist at the University of Pennsylvania. “It certainly can distract from the idea of ​​mutual care,” he says.
It’s been almost half a year since the FDA granted expedited approval to leucanumab, but until now the drug has been nearly impossible to get hold of. That looks likely to change soon, as the FDA will discuss full approval of lecanumab next month. Approval is still pending in Europe, and must also pass a cost-benefit trial before it can be offered by the NHS in the UK. Despite the risks and difficulties in care, doctors plan to give lecanumab and later donanumab to patients who want it. “We are not in the business of destroying hope,” Schneider clarifies.
That being said, doctors have an important role in helping patients decide whether these drugs are right for them. Clinicians must navigate the limited data available to interpret the results patients can expect. Then it is the patients themselves who decide whether the potential benefit outweighs the cost in time, money and health.
People may be willing to take serious risks for the possibility of slowing their disease. for patients and families, Alzheimer’s diagnosis It evokes images of weakness and impotence, of deep emotional wounds unintentionally inflicted on loved ones, of being lost in one’s own mind; It has been said that this is “death before death”. Faced with such a fate, a desperate last resort treatment may seem tempting. Howard says he has patients who tell him they will anything to fight diseaseEven if it killed them.
but for candidates anti-amyloid treatment are so mildly impaired that they can usually maintain their pre-Alzheimer’s lifestyle for a time, and They can live with their disease for a decade or more, If they are elderly, it is very likely that Alzheimer’s will kill them before someone else does. The idea may be widespread that an existence with Alzheimer’s is so pointless as to make any treatment worthwhile, but it destroys the rich lives that people with memory problems lead.
“People with mild, even moderate dementia can lead extremely full and happy lives,” says Howard, adding that the people who died in those trials were very early in their dementia. He still had years of reasonable life left in him.”
This article was originally published on Wired UK. Adapted by Mauricio Serfati Godoy.
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