Imagine if your spouse, significant other, or child, had a debilitating illness. An illness that required round the clock care, just to do the things that we can do for ourselves and take for granted, from changing, bathing, or even using the restroom. Now imagine that you were unable to get insurance coverage that would provide this care, perhaps running up to two thousand dollars per week. You would be faced with either paying for this out of pocket while working around the clock, or quitting your job to care for them, not knowing how you were going to survive financially.
This is the sort of scenario that we hear about in other countries. Countries that we consider to be less fortunate in the area of healthcare than our own. Sadly, this is not something that is happening somewhere else, but right here, in our own country, and perhaps to someone in your own neighborhood.
Most private health insurance companies follow rigid guidelines that are defined by Medicare. These guidelines are driven by diagnosis codes that determine eligibility for medical treatment and ongoing medical support for their covered members. There is a significant portion of the population, however, that have diseases for which there is no specific diagnosis, or where a specific diagnosis cannot be determined. Many of these fall under the umbrella classification of autoimmune diseases, which cover a multitude of severely crippling symptoms, not only physically limiting the individual’s abilities, but also mentally debilitating symptoms that affect cognitive, memory, and motor functions. Beyond this group, undiagnosed patients with brain, liver, spine, kidney, muscular, nerve, and other disorders also face the same problems. When considering all undiagnosed patients collectively, the estimated number of those impacted is very high.
Diagnostic coding issues aside, statistics from a study in 2013 by HealthPocket indicated that, of the 11,365 health plans they examined, 98% did not cover “Long-Term Care”. Of the 2% that did, premiums were typically 80% higher. Even then, guidelines for those that do offer long term care coverage must meet one of the following criteria, as defined by Medicare:
- Must be 65 or older
- Must have a definitive diagnosis
- Have a military background
- Injured or disabled due to trauma
Any individual requiring long term care, and who do not fall into at least one of the above criteria, is not eligible for coverage under a policy that follows Medicare guidelines. This is how most insurance companies operate.
Robert Emery, of Fredericktown Ohio, has been trying to raise public awareness of the serious lack of support for such people. During our recent interview with Robert, he elaborated on how significantly this impacts the everyday lives of these people and their families. “Many of these patients are living in the worst conditions imaginable. They can’t feed themselves, bathe, toilet, even mobilize. Sometimes (they) have to set in their feces, and urine for hours, day, and sometimes weeks, until they have someone come help them”, he stated.
This is also affecting the healthcare industry. Robert spoke to local hospital personnel and stated that they told him “These patients are getting sicker because they are not being treated at home and with the increased infections and illnesses, it affects approximately one out of every three nurses who care for that population, and usually causes workdays missed”
Robert has reached out to the director’s office of Medicare, who have allegedly verified that this is a “crack in the system”. According to Robert, the Secretary of the Medicare Director’s office in Washington D.C. estimated that this could affect between 1.5-2.5 million people nationwide due to the fact that this can affect anyone, and their insurance will be in the same situation. According to the secretary, this could potentially be resolved by the creation of a new pay code to cover those individuals who do not meet the criteria mentioned above. An executive order signed by the President of the USA may be all that is required to allocate funds to support this action.
According to HealthPocket.com,
By definition, LTC represents a lengthy period of financial responsibility for care and the high associated expense can plausibly be assumed to be the reason why most insurers do not cover this service. The CLASS (Community Living Assistance Service and Supports) Act, a federal LTC insurance program championed by the Obama Administration, was suspended in 2011 before the insurance was available due to concerns about the program’s financial sustainability and then subsequently repealed in The American Taxpayer Relief Act of 2012.9
NORD (National Organization for Rare Disorders) are also trying to increase awareness of the problems facing patients with undiagnosed medical conditions. This serious deficiency in health insurance is just one of many issues facing such patients. Part of NORD’s mission is to support those undiagnosed individuals. This includes advocating on important public policies, as well as providing a point of educational outreach to medical professionals and students. In 2016, NORD collaborated with an international group of patient organizations to address the needs of undiagnosed patients on a global scale.
In closing the interview with Robert, we discussed what could be done to help. In summary, this is what we determined. What is really needed is your help, you, our readers. Reach out to your local governor, senator, congressman, and legislators to raise their awareness of the current restrictions within the Medicare system. Share this story with your family, friends, press, and other media, and see if together, we can make a difference. Who knows, perhaps this could impact you or one of your loved ones in the future?