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ALS: What You Need to Know


Wait – why are people dumping buckets of ice water over their heads and posting the videos to social media?

Because: ALS. It’s a degenerative disease affecting the nerve cells of the brain and spinal cord, eventually leading to loss of motor control throughout the whole body. In the later stages of ALS (which stands for amyotrophic lateral sclerosis and may also be known as Lou Gehrig’s Disease), a patient is paralyzed and will experience difficulty breathing and swallowing – factors which contribute to the high fatality rates amongst ALS patients.

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The Ice Bucket Challenge asks celebrities – and indeed anyone – to drench themselves in ice water and publish the video, to raise awareness of ALS. Participants are also encouraged to donate to ALS research, and Time Magazine has reported that the Ice Bucket Challenge has already brought in more than US$50 million for the ALS Association.

All this ALS buzz is great for improving general knowledge and medical research, but it’s got some people wondering: what’s my ALS risk? If I become an ALS patient, will insurance cover my care? Should I take steps to protect myself right now?

ALS – What’s Your Risk?

If a member of your family has ALS, you may be at higher risk of developing it – but your ALS risk isn’t necessarily lower if you have no family history of the disease.

Researchers estimate that 5 to 10 percent of ALS sufferers inherited the condition from a family member, although plenty of other ALS patients have no known genetic risk and yet still suffer from the disease. Recent studies into the genetics of ALS patients do show, however, that even non-hereditary cases of the disease may occur in people with similar genetic variations to one another – indicating that ALS risk could someday be reliably determined through genetic testing.

Then again, other research has found that a person’s ALS risk increases with environmental or lifestyle factors such as smoking, lead exposure oreven military service – perhaps due to increased exposure to harmful chemicals or metals as part of service.

ALS affects more men than women, and people between the ages of 40 and 60 are at the highest risk – however the disease has been known to strike at any age. Approximately 30,000 people in the United States suffer from ALS, and although global incidence is unknown, rates are thought to be similar. These numbers show that ALS is a rare disease, but unfortunately for ALS patients, the prognosis isn’t good: most patients live only a few years after their initial diagnosis, althoughup to 10 percent will survive at least another 10 years.

ALS and Insurance

The neural and physical damage caused by ALS threatens the functionality of patients, but early diagnosis and intervention can help – which explains why people concerned about their ALS risk want to understand more about insurance coverage for diagnosing and treating the disease.

Most health insurance plans will pay for preventative care and diagnostic testing for a range of conditions, including ALS. Anyone interested in screening for ALS (a process that normally includes testing of the blood and urine, x-rays or an MRI, and a muscle or nerve biopsy) should be aware, however, that many plans will not pay for a predictive test – that is, testing for a disease that at present has manifested no symptoms and for which there is no cure. To find out if your insurance company covers testing, give them a call.

In the United States, a diagnosis of ALS qualifies you for Medicare: the public insurance plan for the elderly and those with disabilities. New ALS patients will also benefit from legislation within the Affordable Care Act mandating that Medicare waive its former 24-month waiting period for ALS coverage to begin – meaning patients can start receiving pharmaceutical and therapeutic care immediately. ALS care may include physical therapy to slow muscular deterioration, ventilation devices, and occupational therapy to help patients adapt to the physical constraints of the disease.

How to Protect Yourself

Unfortunately, it’s impossible to prevent ALS. Catching the disease early, however, can improve the effectiveness of therapeutic interventions, helping patients lead longer and more functional lives. Early ALS symptoms include unexpected weakness of the limbs, difficulty walking or running, loss of dexterity or slurred speech. If you have a family history of ALS, it’s not a bad idea to be on the lookout for these early ALS warning signs.

If you’re worried about ALS (or any serious disease), it’s a good idea to start building a strong connection now with an insurance company you trust. Living with ALS means tackling co-morbid health conditions such as asthma, anemia, frequent bone breaks and psychiatric disorders including depression and anxiety. More health care issues means more health insurance claims, and ALS patients benefit greatly from working with an insurance company that will respond to claims quickly and fairly.

As with most serious diseases, ALS worsens with co-morbid disorders such as diabetes and heart disease – so if ALS is a concern, take steps to improve your current state of health. Many insurance policies cover both screening and counseling for diabetes, obesity, heart disease and other chronic conditions, so take advantage of that coverage to keep your health strong. If you’re on an insurance policy that doesn’t cover these services, consider switching to a more comprehensive plan.

Final Thoughts

As ALS research improves, patients will hopefully see better methods of diagnosis and treatment, and perhaps someday, a cure. The Ice Bucket Challenge has been instrumental in bringing ALS to the forefront of a global conversation on disease, and Challenge supporters are hopeful that the resulting education and donation will prove helpful to the ALS cause. It’s a rare disease, but if ALS is a genuine concern to you or a member of your family, examine your insurance options now – you won’t want to waste time comparing policies if an ALS diagnosis becomes reality.

If you have any questions left unanswered about ALS or your insurance options, do not hesitate to contact us. Our expert advisors will be more than happy to provide you with any extra information you may need.

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