Alec Hoke Discusses Lack of Coverage for Rare Diseases

(Newswire.net — January 26, 2017) Fayetteville, New York –After many years facing the complexities of the financial world, investment planning expert, Alec Hoke, learned that health insurers imposed their own sets of challenges. The financial expert has twin stepsons with the rare degenerative disease known as Duchenne muscular dystrophy, or DMD.  Despite participating in clinical trials of Exondys 51 by Sarepta Therapeutics, Inc., the experimental treatment won’t be covered by the family’s health insurance company. The drug treatment, costing more than $300,000 each year for a DMD patient, and is only available to patients who are able to walk as part of an ambulatory test the insurance company requires before agreeing to cover the expense. The Hokes and many other families struggling with DMD are unable to pay out of pocket for the medication. “My stepsons are both wheelchair-bound, making it impossible for them to complete the insurance company’s test,” says Alec. “It is frightening to think that they will no longer be able to receive this life-changing medication.”  To learn more about their struggle, visit http://www.marketwatch.com/story/why-health-insurers-wont-cover-this-300000-a-year-rare-disease-drug-2016-12-29.

 

The Hoke’s sons were both participants in the clinical trials of Exondys 51, also known as eteplirsen.  This included weekly infusions, tissue biopsies, and travel to several states to visit medical professionals working on the medication.  Despite powerful testimony from some of the leading researchers in DMD at FDA Advisory Committee hearings that the drug works, health insurers have decided not to extend coverage for patients who are unable to walk. In fact, only five of the top thirteen commercial health insurance providers will cover Exondys 51, leaving out a significant portion of patients who can benefit from the medication (by forcing patients to undergo painful ambulatory tests, patient advocates say that these health insurer challenges strip the dignity away from those suffering from DMD and similar muscular disorders).  In DMD patients, leg function is one of the first aspects to be compromised, making any ambulatory tests impossible for patients who could otherwise benefit from emerging medications like that developed by Sarepta. “The drug has been shown to preserve muscle function in patients afflicted with DMD,” says Alec. “We will continue to fight the disease and also fight the insurance companies in order for them to extend coverage of this valuable medication.”

Alec Hoke and his family make their home in the state of New York. Currently, Alec works as an investment adviser for Beacon Wealth Strategies, LLC. He has over 25 years of experience in this field and is considered a leading authority on estate planning and long-term investment goals.  For more information on Alec and his work, visit https://www.everipedia.com/alec-hoke.