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Dr. Alfonsina Q. (Nina) Davies Epilepsy Foundation
 
June 2014
 
THE MISSION of the Dr. Alfonsina Q. Davies Epilepsy Foundation is to improve the lives of those afflicted through increased research efforts, a better treatment modality and the elimination of the stigma and prejudice that surrounds this disease in all facets of public life. 
Give a Gift of Life and Health.  Please  DONATE WHAT YOU CAN  for those who are suffering and dying daily from this horrible disease.  Anyone at any age can have a seizure!!!
 
CVS Pharmacy Changes Policies
One voice made a difference. 
 
 
Last month we showcased the story of Joshua Marcus, who passed away of SUDEP. As you recall we reported that he was not able to get his medications from a pharmacy the night before he passed away. He dis not have the money to cover the cost of the medications and CVS would not accept a credit card from his father.
 
Mitch Marcus, his father, took issue with the policy of CVS. He contacted the headquarters company and spoke with the Vice President of Professional Services. CVS Caremark (formerly CVS), is the nation's #2 drugstore chain. It operates more than 7600 retail and
specialty drugstores  under the CBS and Longs Drug banners. It It is the leading pharmacy benefits manager. has more than 60 million plan members.operates more than 7,600 retail and specialty drugstores under the CVS and Longs Drug banners.
 
As a result of Mitch’s persistence CVS is changing their policies and taking the following actions, as reported to us:

1) CVS will insure that partial dosages or “Bridges” as they call them are to be always offered and given to patients who cannot afford to pay for all their meds at once. It will be offered to new customers, not just established ones.
 
2). CVS will allow payment for prescriptions over the telephone by the use of debit or credit cards from third party individuals. 
3) CVS will provide training to all members of the pharmacy staff and the policy will be enforced.
 
We all owe Mitch Marcus a debt for his work and follow his example. We must continue to fight for Epilepsy, to end the discrimination and help with the psychosocial side of the disease. Most doctors and medical agencies never consider the effects of this devastating, underfunded and misunderstood disease.  We must stand up for those who need it most and sometimes cannot do it for themselves.   Mitch did, and he was successful.  Even though his son is gone, he stood up for the rights of those afflicted who remain.  THANKS MITCH.
 
(Above) Patricia Bernard’s painting has activity, form and vivid colors that show the movement in her mind’s eye at that time of her experiences with seizures and migraines. Courtesy of "Sparks of Creativity: Art influenced by migraine and epilepsy.  Josua also suffered from Migraines.
 Epilepsy = Pain Isolation Stigma PREJUCICE AND DISCRIMINATION
 
 
Epilepsy can affect any person at any age.  Over 3 million people in the US suffer from this disease and about 400,000 have intractable epilepsy (untreatable). Most patients are treated with various drugs or surgery. Whether on medication or after surgery, there is no follow up  treatment generally provided for the psychosocial side effects of epilepsy. Insurance companies and health maintenance organizations do not see this as an important aspect of the treatment of  epilepsy.  In short, they do not provide funding.
 
When a person has a stroke or loses the use of a limb, there is physical therapy provided and paid for by their health agency, BUT NOT SO FOR EPILEPSY.
 
What help is there for a child that missed out on important developmental years because of epilepsy, or an older person whose life has just been tossed upside down because of a diagnosis of epilepsy? What about the families of those with epilepsy?. Who helps them, who counsels them? Neither we nor our Nina ever had any help in this area.We were ignorant of what was going on in her head psychologically and thus were unable to understand and be of help. All we saw were the horror of the seizures, but were not educated enough to understand the trauma and damage the seizures were causing.
 
For this reason we have asked Dr. Joel Wade to provide some information on positive actions that can be taken by an individual, or his family. The information will be in the July issue.
 
(Above)  Dr. Alfonsina Q. Davies, age 2 months.  She had epilepsy from birth.
 Next Newsletter - JULY 2014
In the July 5, 2014 Issue: The psychosocial aspects of epilepsy will be discussed. Dr. Joel Wade, PhD, at our request has written an article addressed to those with epilepsy. It is  titled:  HIDDEN STRENGTHS. Go to his website  MASTERING HAPPINESS 
  
 On the road May 2014
 
 
We were at the Money show in Las Vegas, where as usual we talked about epilepsy and distributed information about this dreadful disease.
 
We met several of the presentors who volunteered to display Nina's poster and helped us distribute the several items we give to educate the public.
 
Mr. Bryan Hertz, CEO of Voxox, is one of our sponsors. We took a picture in front of their booth. 

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or by sending an e-mail to  info@ninascourage.org with "Subscribe" as the subject.  _______________________________________________________________________________ This letter is written and distributed by Dr.Thomas P Davies and Nadia Q. Davies No donations to the Foundation are used to pay for advertising, printing or publishing or non program expenses. We fund all related activities out of pocket.