How Newly Discovered Diseases Are Treated by Insurance Companies

Ross Quade | General | 8 Feb, 2016 | No Comments

Newly discovered diseases, or rare illnesses, are often very difficult to get funding to receive treatment. These illnesses are known as “orphan diseases” that affect a very small percentage of people and do not have a widely known treatment plan. This leaves these patients suffering from these illnesses in pain, disabled, or even suffering premature death as a result. Luckily, the laws have changed in recent years to make it a little easier to obtain insurance coverage, but understanding your rights and how insurance companies may handle your situation is crucial to your success. You need to know up front that you will likely have to work harder at getting coverage, so understanding what you are up against can help you get started.

 In Network Providers Vs Out of Network

One of the largest barriers faced with medical insurance is the need to see in-network providers. Every insurance company has a network, which you can confirm with their customer service department. This network of doctors has a specific contract with the insurance company regarding what they are allowed to charge. This works to the benefit of the patient, insurance company, and the doctor. This is a great solution until you have someone with a rare disease that can only be seen by a handful of doctors in their state or even in the country. If those doctors fall outside of the network, the patient is left to foot the bill, or at least a large portion of it as out-of-network costs are always significantly higher than in-network and the benefits are often much more limited.

The Cost of Specialty Drugs

Another problem many patients face when dealing with a rare disease is the price of the drugs that will help their condition. The problem is typically not that there are no medications available to treat them, whether helping to alleviate pain, eliminate an illness, or even prevent death; the problem is the cost of the medication. These drugs are often experimental in nature or very newly approved by the FDA. While this approval is highly sought after and a great way to get it on the market to start treating patients, it is the money that gets in the way. The Affordable Care Act enables insurance companies to place prescription medications in tiers; each tier means a lower supplement percentage supplied by the insurance company and more money from you. The medications in the specialty tier can top thousands and thousands of dollars on a monthly basis for those with a rare disease.

Refusing Payment All Together

In some cases, medical insurance companies can just downright refuse payment, in-network or not. This is the case for one young student at the University of Florida who has a rare form of cancer that could claim his young life at just 22-years old. It is not the fact that there is not a treatment for the cancer – his doctor was lucky enough to stumble upon the treatment, but because the medications necessary for this treatment are not among the protocol already put in place for this type of cancer, alveolar soft part sarcoma, his insurance company is refusing any help with the treatment. Without the insurance, the boy’s family cannot afford the treatment, which means this young student could lose his life simply because of insurance reasons.

Insurance Companies Have the Final Say

Leaving the decision to cover or not cover certain illnesses should not be left in the hands of the insurance companies. Insurance is required in the United States, and so should proper care be necessary. If a treatment is recommended that the drugs are already FDA approved and all other treatments have been explored or even tried, then the likely treatment should be covered. But insurance companies do not see it that way, which is why many people are taking this battle to Congress, to help those in situations like the college student in Florida.

Life Insurance Companies Vary

Some life insurance companies may do what they can to get around paying for coverage for those rare diseases as well, but not all of them. Some companies flat out deny coverage for people with a rare disease while others take into consideration your other health issues before deciding. In most cases, no matter what the suspected outcome, you will pay higher premiums and have more riders on your life insurance policy than someone without a serious illness. If you obtain the life insurance prior to receiving the diagnosis of the rare disease, you do not need to inform your life insurance company and if there is no fine print regarding this disease in particular, the insurance company will be responsible for payment in the event of your untimely death.

Overall, insurance coverage is hard to come by for those with rare diseases. People are constantly petitioning Congress and insurance companies in general to give better treatment to these individuals. Healthcare treatment is available for millions of disease, but if you do not have the right coverage, treatment might not be an option for you. Make sure to talk to your health or life insurance company in depth regarding your illness or potential illness if there is a genetic disease running in the family. You have the right to know your options if and when you need them. As more and more people fight, hopefully the laws will change and these diseases will not be excluded, but for the time being, we all have to do our part.




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