The Guardian's Karen McVeigh talks to Ben Munoz, a medical student and patient advocate from Texas, who welcomes the supreme court ruling after his own battle with debilitating illness:
Munoz's life and his previously conservative mindset over the role of government in healthcare altered dramatically six years ago after suffering a life-threatening stroke caused by a rare brain condition.
"Here in Texas, there's a lot of anti-government feeling, that it should stay out of healthcare" said Munoz, 35, who also runs a network of patient communities for people affected by a rare disease. "I thought that the government doesn't have much of a role to play in this. But when you experience the threat of bankruptcy because of an illness, when you feel that pain, your feelings change."
Ben Munoz Ben Munoz
Munoz has now fully recovered from the stroke he suffered while he was studying for an MBA at Northwestern University in Chicago. Caused by a rare condition, arterio venous malformation, it came out of the blue and Munoz had to undergo two years of gruelling treatment, including neurosurgery and extensive radiotherapy.
Munoz said he was relieved that the ACA had been passed because it included provisions that those who suffer rare illnesses had fought for. Two of the biggest, said Munoz, were that insurance companies have to cover pre-existing conditions and that they can no longer include lifetime insurance caps.
"This was a big one, because for our community, even if you have insurance, the thought that it can be capped is very frightening for people. Mine was $100,000 for one year but I have a friend whose costs were $200,000. We had good insurance but they could have capped it."
The pre-existing condition stipulation was also very important, he said.
"A member of our community was looking for help recently because she was no longer eligible for insurance. She had a facial nerve condition which was a chronic condition. But she lost her job and she lost her healthcare. She could not get insurance because it was a pre-existing condition and she was reaching out to her network to try and find something."
"Rare conditions are often genetic and they are often chronic. People worry about whether their job comes with health insurance. It's very restricting on what they do for a living. The thought that healthcare costs can be capped is also very frightening for my patients."
Munoz welcomed two provisions which patients with rare illnesses had fought for: that insurers could no longer stop coverage for people with dire diagnosis and a public health insurance option so that everyone could afford it.