By Callie Shanafelt
California Health Report
Kalwis Lo, 24, says Obamacare saved his life. But his story is also a cautionary tale about the limitations of the Affordable Care Act — especially as it applies to young people.
Lo could not access insurance through a provision of the health care law meant to help younger adults like him, so he went without coverage. He was then hit by a serious illness at a time when most young people feel they are invincible and may pass on insurance. And Lo wasn’t aware of new coverage that might have helped him once he developed his illness – so he didn’t sign up for it.
Lo and others of his generation have been dubbed “young invincibles” by insurance companies and health policy experts. Young adults between the ages of 19 to 34 are most likely to be uninsured. The success or failure of the Affordable Care Act is dependent in part on healthy people like them joining the insurance risk pool and lowering costs for older, sicker people.
The first provision to target this demographic was the expansion of dependent insurance so that they could remain on their parents insurance until age 26. More than three million young adults and their families have already taken advantage of the change.
But Lo, who grew up in Southern California in San Gabriel, was the son of a low-wage cook and a waitress – parents who couldn’t afford health insurance.
Unlike his parents, Lo went to college. He majored in political science and education at UC Santa Cruz, where he became student organizer and joined the board of the United States Student Association.
He was always tired by the time he graduated in 2011. He thought it was because of the busy schedule he kept as a student organizer.
“I would sleep for weeks and weeks,” Lo said.
Lo lost his student health insurance when he graduated and he couldn’t join his parents’ plan because they didn’t have one. Eventually, his grandfather took him to a family friend who was a doctor. She noticed that his neck was swollen and asked if he had insurance.
He found short term insurance available to recent graduates of UC Santa Cruz still looking for employment. He then began extensive testing to figure out what was affecting his health.
After a month of expensive tests including a full body CAT scan that cost more than $12,000, doctors diagnosed Lo with stage three Hodgkin’s Lymphoma. “That was a really scary time,” Lo said.
The insurance company ruled that his cancer was a pre-existing condition since he was so far into the disease. They refused to cover any of his treatment or tests.
Once the Affordable Care Act health-care mandate goes into effect in January 2014, no insurance plan will be able to deny coverage to people like Lo based on pre-existing conditions. The rationale is that once everyone is required to purchase coverage, insurers can afford to cover the high-risk patients because of the premiums of the low-cost patients.
But that provision came too late to help Lo. When the doctors recommended he start chemotherapy right away, Lo’s first thought was of the expense.
“The whole time I just kept thinking how are we going to pay for this?” Lo said. Not wanting to cause his parents financial hardship, he thought about delaying his treatment, despite having stage-three cancer.
But his parents insisted he begin and the family banded together to help him out. His aunt stepped up to help with the bills until she could no longer afford to help.
“I can’t imagine if my aunt wasn’t there, how much debt I would have racked up,” Lo said.
His parents kept paying for the short term insurance in hope that it would cover something. But it never did. Lo began accruing medical debt in addition to his $30,000 of student loans he already held.
He went through eight months of chemotherapy, worried about financial ruin the entire time.
In Dec. 2011 his short term insurance expired and he applied to other companies. All of them rejected him.
Then one day in Feb. 2012, while listening to news reports on efforts to repeal the Affordable Care Act, he decided to do some research to see if any of the already-implemented provisions could help him.
He found out he had big gaps in his understanding of health-care reform, even though he had actually been a part of campaigning for the legislation as a student organizer, because of the Student Aid and Fiscal Responsibility Act attached to the legislation.
The Affordable Care Act also created a Pre-Existing Condition Insurance Plan as a temporary option until commercial insurers could no longer deny coverage due to pre-existing conditions. The program has since closed in California because it is fully enrolled, but Lo found out about the plan while it was still possible to join.
“I worked on the campaign, but I didn’t even know about it,” Lo said. “The conversation in the media was politically driven. Think if the discussion was around what it actually does?”
Instead of hearing of the program through the media, he went to the Health and Human Services website. That’s where he learned he could apply to be in the high-risk pool of California’s Pre-existing Condition Insurance Plan, which he joined for $152 a month.
Lo was able to finish his treatment and final tests with his plan. He estimates it saved he and his family $15,000 to $20,000.
If he’d known about it earlier, it would have covered all his treatment.
A majority of people in a recent Kaiser Family Foundation survey said they also don’t understand how the Affordable Care Act will affect them. Sixty-seven percent of uninsured respondents said they don’t understand the implications of the legislation.
“My parents don’t have many assets, they would have tried to pay for everything,” Lo said.
Lo has been in remission since June. He was hired in July as legislative director for the organization he volunteered for in college and moved to Washington DC. He now has full health coverage.
For anyone else living in California facing Lo’s situation after 2014 – unemployed or low-income and unable to join a parent’s plan – another option will be available, the expansion of Medicaid to low-income childless adults. The expansion of Medicaid is already underway in California, as are plans to reach out to people who are eligible and get them enrolled in the program.