Back From The Hill

We did it.  The National MS Society's District Activist Leaders came together in Washington D.C. from all over the country for the 2019 Public Policy Conference.  We were trained, briefed and given all the resources needed to share with Congress members who represent our state.  A sea of orange engulfed on Capital Hill to represent every single person living with Multiple Sclerosis.

My husband and I teamed up with another couple from Nevada.  We are from Reno and they are from Las Vegas.  We met for the first time at the conference and we clicked immediately.  We went in and set it off as we lobbied to pass legislation to:

• Remove barriers to generic prescription drugs by eliminating gaming in system.
• Rein in medication price increases
• Cap out of pocket costs in Medicare part D, 25% to 40% of MS patients are on Medicare.
• $2.5 billion dollar increase for the NIH (National Institute of Health), the country's premier institution for medical research and the single largest source of biomedical research funding in the world.  All current MS disease modifying therapies are a result of NIH funded basic research.
• Protect patients from surprise billing.  Patients need reasonable notification if the facility or provider is out-of-network.  Health plan provider directories should include up to date and accurate information.

Nearly 1 million people in the U.S., more than twice the previously reported number, are living with MS, according to a recent landmark study.  All MS medications are tier 5 drugs aka specialty drugs and are very expensive.

We discovered that most of the people we met with are on board and have already begun to effect change for the same issues for many reasons.  We exist to help MS patients get what is needed to live their best lives!

D.C. Here I Come

Next year in 2019 (literally in a few months) I finally get to go to Capital Hill in DC with the National Multiple Sclerosis Society of Southern California/Nevada.

As an MS district activist leader in my state, I am very passionate about MS advocacy and government relations.  This is extremely important to me.  I have been working with the NMSS as a Nevada MS Activist for over 5 years now and I love it.  I have visited the legislature in my state capital Carson City several times and the outcome of sharing my story with lawmakers has made a difference for me and my fellow MSers in Nevada.  We advocated for health insurance for pre-existing conditions, cost of MS treatments/prescriptions and caregiver assistance just to name a few. We are game changers and we don't give up.

Stay tuned for more about my exciting trip to D.C.

MS Society/Nevada Legislature: Breakfast and Learn

Today my husband and I traveled to our state capital Carson City, NV where we participated in a Breakfast and Learn hosted by the National MS Society at the Nevada Legislature.  There were about 10 of us total and 5 of us were MS patients.  We greeted members of the Nevada Senate/Assembly and staff from various departments at the legislature.  I was supposed to give a speech but most people only had a few minutes to drop in for breakfast in between sessions.  So instead we all took time to answer questions and learn what others knew and didn't know about MS.

One person that really stood out to me was a young woman named Amerika.  Her mother was diagnosed with MS and she didn't feel like the doctor knew enough to really deal with MS and the level of care associated with an MS patient.  These are the people that I have the biggest heart for.  I gave her my personal contact information and told her to tell her mother not to hesitate to reach out to me for support and questions that I could help with.  I hope she calls me.

After several hours we went to the assembly floor where we were paired with an assemblyman or assemblywoman.  I was paired with assemblyman Chris Edwards.  The session was shorter than expected being that it was Friday and everyone was eager to go home to their respective cities to spend a final free weekend.  Things were expected to really ramp up the following Monday.





My husband and I enjoyed this experience.  It was neat to see that our state legislature reps were actually laid back and had a great sense of humor.  Everyone seemed to get along no matter what party they identified with.  Our main goal was to share our knowledge and awareness about MS with the people that would one day have to vote whether to pass a bill that directly affects MS patients and caregivers.

My husband is on the far right and I am in the middle on the bottom.

MS Speech Video 10/08/14

As promised in my previous speech: Farewell Biogen Idec, here is a portion of my final speech for Biogen Idec.  It turns out that this may not be my final speech after all.  The day before this speech I received an invite to speak at 2 events in California in November.  So it looks like the door is not quite closed just yet.  Yay!!!

Farewell Biogen Idec

My last speech as a patient advocate for Biogen Idec will be on 10/08/14.  The company has decided not to renew several contracts for the Tysabri advocates.  I think it depends on the need in our area.  I'm not sure but I have really enjoyed that past 3 years as representative of Biogen Idec.  I have flown to the conferences in Boston every year, all expenses paid.  I have forged relationships with tons of other patient advocates and I have met a lot of MS patients just like me trying to figure out how to fit MS into our lives.  This has been a very meaningful experience in more ways than one and I would truly like to thank Biogen Idec for sponsoring me.

Well, I must go now.  I'm awaiting a phone call from Taylor with Lazarr Partners to listen to and time my final speech and give me pointers.  I'm going to miss talking to her.  My husband plans to record my final speech and I plan to post it on this blog.

My Interview With Patients Like Me

Patients Like Me Interview

Hello, I wanted to share an interview that was featured on the Patients Like Me blog.  PLM is a website where patients come together and share tips and information with each other about their health conditions. Whether you have MS, ALS, Aids, Bi-Polar disorder, Chronic Pain or more, patients like me is a great site to visit, learn and share.

I don't get to blog as much as I would like so it was nice to do this interview for PLM.  I hope you enjoy it. Of course if you follow my blog then you have heard some of this before but not everything.  So please take the time to read and even leave a comment if your heart desires.

Thank you for being a part of my journey.

Starla D Espinoza

MS Cannot Be Ignored

MS is a progressive disease and if you have been diagnosed with MS, be sure to take action and choose a treatment plan as early as you can.  The sooner the better.  I have encountered several people with MS that are not being treated for various reasons, but mainly out of fear.  The best advice I received when I was facing the possibility of being diagnosed with MS was to choose a treatment as soon as possible.  I'm glad I listened.  The person that said this to me was a female co-worker in her early sixties who was diagnosed with MS when she was in her early thirties.  She was in denial and chose not to face the reality until the disease progressed significantly and she had no choice.  By the time she decided to treat her MS, she had too many lesions in her brain to count.  She can walk but she appears to be drunk when she walks.  She would fail a field sobriety test without any alcohol in her system.  Now I tell people the same thing.  Please take this diagnosis seriously and if you have to seek a second or third opinion, then by all means, do so but don't wait too long to choose the right treatment for you. Your doctor can help you make an informed decision.  There are more MS treatments available now that were not available when my friend was diagnosed with MS over 30 years ago.

I began treatment for my MS the same night that I received my diagnosis.  I already knew that there was a 50% chance that I had MS but it took almost a year because I only had 1 sign of inflammation in my T12 vertebrae of my spinal cord.  That's the middle portion of your back.  There was nothing noticeable on the MRI scan of my brain so the doctor could not diagnose me with MS until I eventually developed multiple lesions in my brain and additional lesions in my spinal cord within 7 months.

I am very, very passionate about staying informed and helping others with MS come to terms with their diagnosis and learn as much as they can about their enemy, Multiple Sclerosis.  I did as much research as I could about MS.  I really hoped that I didn't have it but I wanted to be prepared just in case.  You may not like meds, and neither does MS.  With the right treatment, you will win and MS will lose.  You may not appear to have anything wrong with you for years, but it's not worth the risk to wait until things get worse and believe me, things will get worse.  MS does not stop just because you don't believe in taking medication.  Ask people with cancer and AIDS how they feel about all the medications that they take to sustain their quality of life.

My current MS therapy is aggressive and carries a risk of developing a rare brain infection called PML.  Cancer, lymphoma, leukemia and AIDS patients face the same risk because anything that weakens your immune system can make you vulnerable to opportunistic infections such as PML.  Thanks to the advanced treatments available for AIDS, the risk of developing PML is less likely.  There is a common virus associated with PML called the JC virus, found in about 85% of the adult population.  Most people have been exposed to this virus by the age of 10 but not everyone carries this virus.  Those that do not have the JC virus cannot develop PML.

I found out that I do have the JC virus about 3 years ago but the risk factor has always been real for me from the day that I made the decision to try such an aggressive treatment.  The effects of MS are far more dangerous and real for me to ignore.  The risk is worth it for me at this time in my life.  I have been on this treatment for 5 years and I have not had any relapses.  The treatment does not take away or reduce the symptoms of MS.  Tysabri slows the progression of this super ugly and complicated disease.  Slowing the progression keeps me out of the hospital and able to enjoy my life.