US health care reform

Anyone who knows the Ritter family's story might be surprised by how idyllic their house looks. They live in a new neighborhood on the outskirts of a town called Manheim in south-eastern Pennsylvania, occupying a two-story house with a light-brown wooden facade typical for this area. A gray station wagon stands in the driveway; roses and chamomiles decorate the entrance. The family's pet dog, a poodle named Bailey, plays outside. The air smells like freshly mown grass and freshly baked cookies.

Stacie and Benjamin Ritter live here with their four children: Abby, Ethan and twins Madeline and Hannah. The twins are identical but have completely different personalities. "I am the hippie," says outgoing, talkative Madeline. She is dressed in a linen skirt and wooden jewelry. In her spare time she paints pictures and makes earrings. Hannah, meanwhile, is shy and reserved. She wears black eyeliner and writes short stories about vampires and werewolves. "Hannah is a bit of a goth," says Madeline of her sister.

Hannah and Madeline are two typical American teenagers - but they have already lived through a lot more than most other 14-year-olds. When they were four they both developed a rare form of leukemia. They spent eight months in hospital fighting for their lives before a suitable stem cell donor was found in Germany. But they are still not healthy. "The treatment doesn't end when you leave the hospital," explains Stacie.

The cancer therapy stunted the girls' growth. They are smaller than their female classmates and only a few centimeters taller than their sister Abby, who is five years younger. Their survival still depends on expensive medication.

The burden of pre-existing conditions

The twins were lucky to survive cancer, but in the current US health care system they are classified as high-risk patients. The term "pre-existing condition" hangs over them like a dark shadow. For a long time, American health insurance companies did not accept patients who had suffered from serious illness prior to applying for health insurance, or they offered them unaffordable premiums.

President Barack Obama's health care reform plan prohibits this kind of discrimination in the case of children, and it is set to include adults from 2014 onwards. But if the US Supreme Court rejects the reform, the Ritter twins' history of cancer could become their downfall. This could happen if their father lost his job and with it the family's health insurance - but even without this misfortune they would inherit the burden on becoming adults.

"We're talking about thousands of dollars in premiums," says Stacie. She sits at the dining table, speaking slowly as she recalls her daughters' illness and their health insurance struggle. Her words reveal a deep disappointment with her country's health care system. The leukemia treatment resulted in $30,000 in debts for the family. Half a year after the twins were diagnosed with the illness the family had to declare insolvency.

The health insurance battle

The family managed to overcome the crisis, but only because Benjamin was able to return to his job in technical support quickly after taking time off to care for his sick daughters. The debt was paid off, but there is still an ongoing battle with the health insurance companies over the medication that the twins are taking, says Stacie. Every day, the girls inject themselves with growth hormones; several boxes of pharmaceutical products fill the family's refrigerator. The treatment costs around $1,600 per month - and the health insurance company refuses to cover the costs.

Since her daughters' diagnosis, 38-year-old Stacie has been an active supporter of health care reform in the US and the Democratic Party. She holds emotional speeches in favor of the reform and displays posters with photos of her twins in hospital at demonstrations. Some of the photos also show the girls' father with a shaved head - which he did in solidarity after Hannah and Madeline lost their hair due to chemotherapy. "It's tough, but sometimes this is the only way to attract people's attention to such cases," explains Stacie.

Controversial topic

Together with her daughters, Stacie is awaiting the Supreme Court's ruling. "People who don't know me are deciding about my life," says Madeline. She looks a lot younger than she is, but suddenly seems very grown up when she talks about health care policies, insurance premiums and lobby groups. Both she and Hannah accompany their mother to most of her speeches and demonstrations, talking to other cancer victims and the press. In their summer vacations they take part in camps for young cancer survivors. They have plans for when they grow up too: Hannah would like to become a writer and Madeline would like to go into politics.

The girls find that they cannot talk about health care reform to most of their peers. "They don't understand," says Madeline. But many adults in the country also find the new laws, which take up 2,000 pages, hard to grasp. This creates fears and doubts.

The core objective of the reform - compulsory health insurance for all - is highly controversial. Nearly half of the Americans surveyed are against it and see it as a limitation on their freedom. They oppose the solidarity principle - the healthy financing the recovery of the sick - but "this is has already been done for a long time," points out Stacie. American hospitals are already obliged to treat people without health insurance in emergency situations. "The costs are transferred to those who have health insurance in the form of higher premiums," she adds.

The Supreme Court's decision is based on exactly this principle. But if the reform is declared unconstitutional, it will fall through.

Major overhaul planned

The new law has the potential to make the US health care system - one of the most expensive in the world - more affordable. If each person contributes financially to a common system, there is more money available for treatments. But this entails another controversial measure: in order to ensure that the insurance companies do not take most of the money for themselves, the new laws demand that they adhere to a predetermined distribution of funds. As much as 85 percent has to be invested in health treatments alone and not include administration costs or salaries. There has never yet been a uniform ruling on this.

"Each year, the rules regarding contracts between employers and health insurance companies have been changed, and each year the premiums have increased and the service has worsened" says Stacie. "The insurance companies are only interested in profit, but this is not about consumer goods but about human life."

Until now, health insurance in the US has functioned in a similar way to car insurance. There are, for example, set limits to insurance payouts - the so-called lifetime caps. They determine how much money can be paid out to one patient during their lifetime. In Hannah and Madeline's case, this sum is two million dollars per head - not much for young cancer patients. As part of the health care reform, the Democrats are planning to eliminate such insurance caps by 2014 - but this is also something for the Supreme Court to decide on.

If things go Obama's way, the Ritter family will not have to fear becoming insolvent again - and the twins will not have to worry about losing their insurance in the future due to their pre-existing condition. They will also be guaranteed health insurance if they are unemployed.

In short, the Supreme Court's decision will determine whether Hannah and Madeline can lead a carefree life or will have to continue to fight for their health in the future.

Author: Antje Binder / ew
Editor: Ben Knight