By Katherine Narbonne-Mirchin, MBA

Getting a diagnosis of ALS can result in understandable tunnel vision. The news is shocking, shaking even the strongest people. As patients experience the changes in their bodies, their minds become focused on their health. Financial concerns are often sidelined as people come to terms with their disorder. If ignored for too long that could lead to a personal fiscal disaster as resources are depleted.


After the diagnosis, the patient and his/her partner or family need to assess their financial status to see what changes have to be made so their lifestyle can be maintained. A 2005 survey conducted by ABC news found that the fastest route to bankruptcy was not credit card debt but lingering medical bills. Families need to assess these three key areas:

• Liquidity
• Employment
• Insurance Policies (Health, Disability, Life)

Liquidity:
The patient and his/her partner and family need to evaluate their assets versus debt. People often vary in their ability to work after being diagnosed. Evaluating expenses and income each month will help determine how much a lifestyle is going to change. Debt needs to be addressed immediately especially if the patient was the primary bread winner. A new household budget and realistic expectations need to be established if debt is going to be properly handled. Another consideration is the future care of the patient as some insurance plans (including Medicare) may not cover all expenses. Having enough cash on hand to cover expenses is going to challenge a person’s ability to avoid resorting to credit cards to cover debt.

Employment:
All people with ALS need to have a realistic expectation on how much longer they can work, especially if they are the primary earner. If you are not familiar already, review your company’s position on disability. Speak with your employer about your diagnosis to see if modifications can be made to improve your working conditions. Our doctors can provide the documentation to justify a reasonable request. Some workplaces provide a paid leave for a certain number of months once a person goes on disability. The Americans with Disabilities Act of 1990 forbids employers from discriminating or firing employees with an acquired diagnsis.

Health Insurance:
Most Americans receive their health insurance from their employer. If the patient‘s insurance is job sponsored and resignation is immediate, he or she will need to review the company’s HR manual to see how much longer benefits will continue without COBRA and when COBRA will take effect. COBRA, the Continuation of Health Coverage Act, which was passed in 1986, assures that benefits will be covered for 18 months after leaving employment. It affects businesses in the private sector with more then 20 employees. However, going under COBRA raises the employee’s premium. Patients with ALS are eligible for Medicare almost immediately. With the current law, Medicare will also take care of medications (See our Winter Newsletter 2006, Vol. 18, no. 1, for more details). A good supplemental (secondary insurance) with Medicare will take care of most medical bills. HMO’s have terms that people should be aware of such as preexisting conditions and exemptions to care. If a change of insurance does become necessary, contact your doctor’s office to see what plans are accepted.

Disability Insurance:
Disability Insurance is offered by many companies and private payors. After being diagnosed, if the patient has a disability plan, he should review the terms and conditions. Most policies are based on the amount invested, and pay a certain percentage of the salary the patient was earning before going on leave. It is important to know if there is a limit to the amount of time the recipient can expect payments. If the patient has no private plan, Social Security is available upon diagnosis, like Medicare. Both programs waive the 18 month waiting period once a person is diagnosed.

Life Insurance:
There are two types of life insurance: Term and Permanent or Whole Life. Term life insurance is the cheaper way to buy life insurance. It costs less and expires after a certain amount of years with the beneficiary unable to collect unless he dies. Permanent or whole life insurance requires additional money (5-10 times more) and is tax deferrable. The holder of the policy has the option to collect the “cash value” invested at any time. Some employers offer life insurance to their employees. Life insurance is designed to allow beneficiaries to maintain their lifestyle after the loss of a loved one. The amount is determined usually by the social status of the person and how many dependents there are.

By being proactive and taking charge of personal finances, a patient can avoid the additional hardship and provide peace of mind for all involved. There are educational resources available in local libraries, on the internet and through non-profit groups.