Writer and artist, Emily Suess has put up a fight against Lincoln Financial Group after her claims for disability cover were denied.
by Laurie Garlington, contributor
If 39-year-old Emily Suess lived in the UK, she would not need to crowdfund while undergoing cancer treatment. It can be argued that socialised healthcare which is available in the UK has made the difference to survival rates (which stand at around 50% according to the National Health Service) for ordinary people living on average or below average incomes. Emily lives in Illinois, rather than England. Five years ago, she was diagnosed with cancer related to an inoperable tumour on her brain stem.
Early on, chemotherapy and radiation helped shrink the tumour but now it continues to grow, altering Emily’s life. The cancer has created complex challenges obliging her to follow new routines to allow her to rest frequently. Coping with the demands of her cancer while resisting it, is a daily battle. One fight Emily did not anticipate was with her insurance company Lincoln Financial Group. Emily paid insurance premiums via her employer’s scheme but when she needed the promised financial support, she was stonewalled.
Emily’s experience of living with cancer is that insurance companies routinely add to patients’ financial stress. “In the U.S, it’s weirder for someone with a cancer diagnosis to not need to crowdfund financial support,” she says. “Insurance companies have driven up medical costs and frequently deny coverage at the same time. A cancer diagnosis means bankruptcy for a lot of people. I have set up about three different GoFundMe campaigns over the years, my most recent one to help with the costs of moving us to my mom’s and the disability renovations I need.”
She has gone on record to publicise her struggle with Lincoln Financial which is a multi-layered group of entities, and, according to Emily proactively worked against her disability claim which was her only source of income to pay her mortgage and meet her cost of living expenses. The fight for disability benefits became protracted and eventually public.
Tactics and ticking boxes
Emily has openly discussed her experience of dealing with and ultimately confronting Lincoln Financial Group. She describes their tactics to deny her claim as ‘gaslighting’. Unexpectedly, she was prepared for this. As the survivor of an emotionally abusive first marriage to a man who lied pathologically and used gaslighting as a method of control, Emily recognised similar patterns of behaviour, this time on a corporate level. Emily instinctively new how to respond.
She recalls the tactics her insurers used to deny her entitlement to disability benefits: “First, someone with the company would call me frequently and ask leading questions. They intentionally misunderstood my responses in an attempt to find a way out of paying my claim.”
Like all insurers, Lincoln Financial Group has doctors on their payroll. Emily shares feeling betrayed by healthcare professionals who were sworn to act in patients’ best interests but in her case, worked to undermine the validity of her claim by devaluing the seriousness of her illness.
When Emily explains the tactics, she observed doctors using, she says, “They had access to my medical records–but never met with me or spoke to me. They would say things about my health that were patently false. Like that I was in remission, or that I could walk for 30 minutes.”
Emily has documented that she only has short periods where she has enough energy to be mobile at home. Showering and dressing can be exhausting, for example. She may be unable to move for several hours afterwards. When extremely fatigued, she writes and draws while lying down.
When it became clear to Emily that Lincoln Financial Group had no intention of honouring her claim, she decided to appeal. According to her, the insurance company failed to provide copies of her files although they were legally required to do so. Finally, she demanded that Lincoln Financial couriered the documents overnight and requested proof that they had complied.
Going public to out a corporate insurer
Once Emily went public, calling out the doctors’ actions which led to her claim being cancelled, Lincoln Financial went on the offensive; simultaneously stating they didn’t discuss ongoing claims and saying that they had “reached out to the claimant to ensure that she understands the appeal process.” In effect, Lincoln Financial Group put the responsibility on Emily, implying a lack of understanding of the company’s policies was the issue rather than any medical misconduct by its appointed doctors or unfair treatment of Emily by the insurance company.
She says the experience has had a lasting impact: “Although they caused me great financial stress by not paying me for an entire year and I had to appeal their denial twice which increased my overall anxiety and stress, I don’t know that I could legally prove the harm they caused. I knew they would never acknowledge wrongdoing, just based on what I had already gone through. But if my word counts for anything, they absolutely made my life hell during that time.”
Social security was the only benefit available to Emily, comparable to disability benefits for individuals in the UK. The financial support is meagre, and help is not guaranteed. Emily explains that while social security claimants can be left in limbo, her case was fast tracked because of her condition: “Many people are not approved for months or years — if at all. And it often means hiring an attorney to navigate disability determination hearings. My having a brain tumour was taken seriously. The Social Security office approved my application relatively quickly.”
Privatising the NHS could soon result in America’s insurance company model
The annual death rate for cancer patients across the US is 600,000 with more than 1 million people being diagnosed. These figures from the Center for Disease Control are more than double the annual mortality rate for the whole of the United Kingdom where cancer charities report that 294,600 people died of a form of the disease. Although this is an increase on previous years, survival rates of 10 years for commonly diagnosed cancers stand at around 50% for adults, regardless of gender.
In the U.S., healthcare is a private industry where insurance companies determine the level and length of treatment. American insurance companies realise revenue of just over $1tn equivalent to more than £795bn annually from healthcare coverage. They operate in a loose regulatory environment which could be established in the UK if the conservative government moves to completely privatise the NHS in an American trade deal.
Statistics published by the Insurance Information Institute in America, showed that roughly in the past three years, insurers paid less in benefits and processed fewer claims, including those for disability benefits. The total figure was reduced from $762 billion to $747.4 billion, a decrease of roughly $15bn. Claimants who sign up for insurance benefits often do so as part of employee benefits packages while they are in good health and earning a regular income. Like Emily, they may only discover their insurance policies are virtually worthless when the anticipated benefits are needed most.
If this is the future of healthcare in the UK, millions of patients will inevitably fall through the existing safety net; some will be part of the working poor, already struggling with the rising costs of living, others financially middle class and able to afford insurance premiums but subject to corporate insurers’ criteria for treatment.
Living with cancer and the future
Several years on from her diagnosis, Emily describes herself as a ‘haver of cancer’. She has married for a second time and looks forward to moving with her husband Dan to her mother’s home once it has been remodelled with accessible features. Whereas this sort of home adaptation would be managed and paid for by a local authority in the UK or an accessible home might be made available by a housing association, Americans with accessibility requirements are obliged to fund this on their own. In Emily’s case adaptations to create an accessible environment are estimated to cost more than $10k.
In her current home with Dan, her dog Boomer and cat Izzy, Emily works on her memoir, Who You Gonna Believe, a reference to her first husband’s pathology. Drawing Zentangles has become a form of relaxation as the concentration required leaves room for little else to distract. Her hope is to be able to make the move so that she can be under one roof with the firm support of her entire family.
When she talks about the recent past and taking on Lincoln Financial Group, she is focused on the business of selling insurance and what bad practice means to people who trust insurers and are then let down. When asked if she could change anything about how health insurance operates in the U.S, Emily says, “Their very existence would be illegal. They make decisions about people’s health and quality of life based on whether or not it profits shareholders financially. There is no place for that in any society that cares about people.”