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Multiple Sclerosis/Wanting to start a non-profit organization to help people with major illnesses!

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QUESTION: Hi Ms. Marlene! My name is actually Keri McDaniel! We may be related..lol. Anyway, I am writing because my goal by the end of this year is to start up a nonprofit organization for people with major/chronic diseases and either unable to attain health insurance or even WITH health insurance, treatments and medicines are still too high.

Let me explain my passion, I am 31 years old and diagnosed with Diabetes Type I. I am insulin dependent. I was diagnosed with diabetes at the age of 2. I did not realize how crazy the healthcare world was until 2009. I have my B.A. in Psychology and have been working in the field of social services for 10 years now. In 2009, I was interviewed and accepted a job as Graduation Coach in a local high school in Mobile, AL. The pay was excellent for me. More than I had been making since getting out of school.However, there were no benefits as it is a contract position. Prior to accepting this position, I had always had Blue Cross Blue Shield. I thought, well, I make a certain income, surely I can afford to get individual insurance. I had no clue that they could deny you for pre-existing conditions. So, now it is 2013, I'm still working the same job, my pay has increased, but I still cannot get health insurance that makes sense. There are private insurance companies that cost roughly $300+/month, but those don't cover my prescription medications or medical supplies...which is essentially the ONLY reason I need health insurance. I am never sick, thank God, but with the income I make, to pay for medical supplies and insulin once a month runs me at about $600. Therefore, I have a more difficult time buying another car, a place to live, normal necessities that an independent 31 year old would enjoy.

As unfortunate as my life seems however, I have a best friend that was diagnosed with MS approximately 10 years ago. She is 33. Conditions of course have become increasingly worse through the years. She was was working for a bank making a decent income until her condition made it pretty much impossible for her to work. She was slurring her speech, sometimes couldn't type, couldn't see, couldn't walk, etc., etc. She was able to hold on to her job to file for disability before they just laid her off. Currently, she is receiving benefits via her disability. However, her treatments that she receives monthly, her insurance pays 80% and she has to pay the other 20%. That 20% she has to pay equals to $2000 a month. She struggles to find the funds to pay this every month. Usually, calling her friends to see if anybody can donate. I am stressed for her.

So with all that being said, my desire as stated in the previous paragraph is to start a non-profit organization where I can get vouchers to working middle class individuals where income is between $33,000-46000/yr and/or people who are on disability but treatments and medications cost more than what they receive from disability/social security every month (which is her case as I know she receives no where near $2000/month) I know this may be out of your expertise, but I am wondering if something like this would be of interest to you and could I get you in the future to talk to other individuals in the support groups you have attended. Maybe I can create a survey that maybe they can email back to me so when I get my organization off the ground I can reach back to them if their situation applies. In Mobile, AL, we have an organization called Victory Health Partners that is excellent but of course caters to no/low income individuals. I would like to reach out to the "other" individuals who fall through the cracks but their need for assistance is no less of a shortage.

In conclusion, I was considering being able to provide medication and medical supplies. I considered starting a private, specific health insurance company. That may be more  taxing than I'm prepared to handle, but I am still researching. I would like to specifically cater to those individuals who cannot get health insurance or have been denied due to their pre-existing condition and as a result, they are having to pay for medications, treatments, medical supplies, etc., out of their own pockets. I have also considered maybe some kind of voucher that individuals can get that will give them some sort of percentage off their medications, treatments, medical supplies from the money the non-profit organization brings in. I am trying to streamline my thoughts and my plans. Please tell me your thoughts and any feedback would be greatly appreciated.

I pray that all is well with you and welcome your response. Be blessed and please keep in contact in the future.

ANSWER: Hi Keri,

I admire your attitude and desire to help others.  However, I'm not sure how I can help!  

Let me know!

Kindest regards,

Marlene

---------- FOLLOW-UP ----------

QUESTION: Hi Marlene! I guess I would like to know more of the treatments/medications you take? How much does it cost you?? Do you have medical insurance? How much does your insurance cover and how much do you pay out of pocket?? How much do you spend a month on anything medically related to MS?? Is it a struggle for you?? Do you consider yourself middle class?? Why or why not?? I'm just trying to gather more market information for what I'm trying to do since I am not diagnosed with MS. Diabetes is a whole different ballgame. Also, I believe you said you are in a support group, maybe I can get some interest in my idea for the medical nonprofit from people diagnosed with MS in your support group. I would like to keep in contact with you past allexperts if that's ok?? How are you doing/faring currently?? Some information that you give me I may be able to pass on to my best friend that is diagnosed with MS that I was referring to in my original email.

Answer
Hi Keri,

Medications for MS differ per person; i.e., depending on when they were diagnosed and what their Neurologist recommends.  I am on Medicare and AARP.  Co-payments differ depending on the medication and how often it is taken by the individual.  

Good luck with your endeavor!

Regards,

Marlene

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Marlene McDaniel

Expertise

I was diagnosed with M/S in 2005. Since that time, I have read numerous books on all aspects of this disease/illness. I can give good advice on how to handle being diagnosed, the emotional effects this illness/disease has on a person, the ups & downs of this illness/disease and what to expect from family members and friends in regard to this illness/disease.

Experience

Diagnosed with M/S in 2005. Read numerous books on this illness/disease. Have attended many support group functions through the M/S Foundation. Currently an Ambassador for the State of California with the Multiple Sclerosis Foundation.

Organizations
Currently an Ambassador for the State of California with the Multiple Sclerosis Foundation. Author for various M/S Foundation articles.

Publications
Various articles for the M/S Foundation.

Education/Credentials
AS Degree in Law Enforcement. Received a Certificate/Diploma from Heald Business College in 1978. High School Diploma in 1976.

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