Category Archives: Advocacy

Honoring Mothers Living with MS

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Motherhood.

        It requires strength, patience, tolerance, common sense, devotion, and countless other skills and virtues. It’s hard, demanding, never ending. It is the hardest job in the world.

Living with MS

    It requires strength, patience, tolerance, common sense, perseverance, and countless other skills and virtues. It’s hard, demanding, never ending.  It makes the hardest job in the world extra hard.

I know because I am a mother living with MS. Unconditional love despite the challenges. it’s good to focus on how it’s built our character, and how that character is transformed.

I honor all mothers this Mother’s Day, especially those living with MS! 😀

 

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

 

Is it Our Right to Die?

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Right to Die has been a sensitive subject and debated for decades. Some older folks like me  may remember names like the Hemlock Society and Dr. Jack  Kevorkian. It’s been considered taboo and carries a stigma.

People have debated the personal choices about their body for just as long—suicide, abortion, medications, dying, etc. Living with advanced MS, and aging, forces someone to think about the right to live or die for different reasons and in different ways.

An article  about Multiple Sclerosis and the Right to Die  was just posted by MultipleSclerosis.net, an online Health-Union community. Kudos to the writer and the administration for allowing this article to be shared. The article explains Right to Die from the perspective of an MS patient, whose quality of life becomes severely diminished due to pain and other physical, mental, and emotional limitations.

Add in self-dignity and humility. I have been traumatized too many times to count from the loss of my bladder and bowels in public. Even when hospitalized, having a nurse clean up after an accident in bed is humiliating. I could write another book on this subject alone.

Many comments were quickly added to support and share the words written. I added this partial comment in response to the article to point out other thought-provoking reasons:

I agree whole-heartedly with the comments made so far. I would like to add there are additional reasons a patient may desire assisted suicide beyond their (no) quality of life. It’s personal, but I feel compelled to share this.

I am currently involved in my 90-year-old mother’s dire health situation.  She fell In January, broke some ribs, and was erroneously given a pain med that caused an horrific adverse drug reaction with another med she was taking.  It left her in a condition requiring 24-hr. in-home care for two months.  Being the only sibling living in AZ, I recently arranged to transfer her to a senior care facility for her benefit and that of my 90-yr. old stepdad.  It’s a physical, emotional, mental, and financial nightmare for us all, and her future is not in her hands.  Last week, I sat down with my husband to say I don’t ever want to put him and my son through this.  While I’m too old to advocate for right to die, I plan on writing about it on my own.

It is heartbreaking, gut-wrenching when someone you love is telling you how terrible they feel and begging for help; and the only thing you can do is hold their hand and be there with them.  Yes, there is end-of-life care nowadays, but it isn’t always the best path for everyone.

Maybe it should be phrased, “The Right to Choose to Die”.

The Hemlock Society’s motto was “Good Life-Good Death”.  For some, yes; for too many others, no.

What is your reaction or thoughts about this?

*************

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

MS Awareness: Are We Shooting Ourselves in the Foot?

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March 29, 2022
5th week, MS Awareness Month

I let my hair down last night.  I posted a distressing message on social media.about MS Awareness Month.

I have just reached my 42nd year of living with MS, and I was in one of my distressing moods.

Throughout MS Awareness month, I guess I was irritated by the upbeat MS events, activities and stories I’ve been reading all month on numerous publications and MS platforms. I was tired of all the happy posts on social media, and wanted to express my real feelings at that time. It seems the same every year.

I get it that people with MS need lifted and this is an appropriate time to do just that. But why does it stop there?

Truth is, people need EDUCATED more about MS.  It sucks. It’s hard. And I’m tired of.  pretentious posts by people who glorify that that “MS” doesn’t define them. MSers are shown doing all kinds of wonderful things. “There are SO many treatments available now. Just pop a pill or get a shot.”  Inspiring, yet defeating. Are we shooting ourselves in the foot?

I want honestly. Realism.  Why aren’t there more innovative ways to help people UNDERSTAND the complications and implications of MS.  Display faces of distress and sadness instead of smiling ones. Why not show a list of things that cause financial impact–job loss; medications; bladder supplies;  equipment… Or of our losses–income. freedom, independence, social life, household limitations…

I was gratified that some online websites offered great MS education in March. MS Wellness Project has an excellent post about resources. The Rocky Mountain MS Center  has a free newsletter entitled “Painting the Picture of MS: How can we help the People Around Us Better Understand Multiple Sclerosis?”

There are one million people estimated in the U.S. (2.5 million worldwide) living with MS. However, when you count the people not living with it–friends, family, healthcare workers, employers, public service, strangers, etc.– the number dealing with MS is in the millions!  Helping everyone to understand MS helps those of us living with it.

Today is another day. It’s education time, one of my passions in life. If everyone dealing with MS educates just one stranger with MS, it’s an impact. There are strength in numbers.

Although MS Awareness Month is over, educating others about MS doesn’t have to be,

What do you think?

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

 

What Do You Do All Day?

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March 15, 2022

My occupation is now “retired” after being on long-term disability for years.  Child rearing is over. From time to time, the question surfaces, “What do you do all day?”

Now that’s one of those questions that can be tricky to answer, like the question, “How do you feel?”  It depends on who’s asking and what mood you’re currently in.  It’s
a judgment call.

If it’s a casual acquaintance, I give them a few of the basics: I rest intermittently, exercise or swim, read, write, and volunteer when I can.  One of those subjects will usually switch the conversation toward another direction.  There is no sense in getting into the details of what a typical day is really like; it would probably make them uncomfortable, speechless, and sorry they asked.

Besides, everyone throughout their life has something of their own to deal with. Or, getting too specific about what I do can lead into unwanted conversation.  For example, there are the people who want to give advice about all kinds of things, which can get annoying if they really do not understand MS.  And then there are the “one-uppers”; who are more interested telling a personal story that is far worse than your situation.

But occasionally, someone asks me that question in a way with a certain tone that will get a rise out of me.  “So, what do you do all day?”   Even when I used a cane, then a walker, and now a wheelchair; I usually “look so good” and am smiling and perky.  I keep busy, rarely complaining.  It’s like they’re wondering why I got disability from the government or why I don’t want to go out somewhere.

Like most people with MS, I do things on my own as much as possible and strive to maintain independence. But that sometimes can backfire on me. It conveys a message that “I can do it; all is well…” Then if superwoman starts to fall apart, I’m asked “What’s wrong with you?”

We folks with MS endure invisible things like the fatigue, depression, numbness, and weakness that make life complicated.  It doesn’t matter whether we are in a wheelchair or not. We have kids and grandkids, chores to do, errands to run, households to maintain, finances to manage.  Life without a chronic illness is challenging enough.  Throw in MS and the time and energy it takes to do a task double or triples. Often, many things get done differently, partly, or not at all.

But how do you explain all this?  Should you try?  Do they really want to know?  If you think so, maybe take the opportunity to say, “not as much as I’d like, I can use some help.” Or is it easier to just say one thing, and then ask in return “What do you do all day?”

Again, it’s a judgement call.

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com

 

Insurance Companies, Health Care Costs, and the Chronically ill

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“The Need to Fight Back”

Medical insurance companies are out of control because they have too much control. The same can be said about pharmaceutical companies and other large health organizations like hospitals.

Getting coverage, keeping coverage, being able to afford coverage are huge headaches for us. We need them and they know it. These greedy companies have tremendous power and resources, leaving us at their mercy. They decline truly needed things that our specialists recommend for us.

A fellow MS Blogger, Dave Bexfield, recently won a claim against a large insurance company that wrongfully denied payment for his life-saving stem cell procedure. http://nyti.ms/1oUQ5ZK  His 4-year persistent battle that included the help of NY Times’ The Haggler finally ended with his victory.

A victory that hopefully will inspire many others to follow his lead and fight for their rights. More people need to do this; there is strength in numbers. We are the buyers of their products; our voices and actions against their wrongdoings as a group can impact their control. Especially if we get our victories publicized by all types of media and large organizations; like Dave’s involvement with the New York Times and his social media bombardment that followed.

Fighting for your rights from insurance companies is hard work, especially when you are ill. It requires a tremendous amount of energy, time, patience and often money; things that people—especially the chronically ill–don’t have much of. The frustration and stress that one endures with the phone calls alone can turn the sanest person insane–long hold waits, dropped calls, rerouted calls, not being able to talk to a person… Most people who take on the fight with these big guns eventually give up; these companies count on it.

Those of us who are truly sick and trying to have quality in our lives are getting doors slammed in our faces for things that could help provide more quality or relief. We pay big bucks for our insurance coverage with our limited incomes that suffer because of our disabilities/illnesses.

Give us the benefits we pay for or are entitled to! Blow the whistle when something is just wrong.

WHAT TO DO?

• If your doctor recommends a drug, procedure, equipment, etc., make sure you get it.

An insurance company should NOT be the one who determines what’s best for your health—it should be your doctor and you!

• Read your claim statements carefully to make sure they are accurate.

For example, I went into the ER last year for chronic constipation, and my $5,000 invoice was for a coffee enema. It also included a $258 charge for a pregnancy test. I was 58 years old! When I called the hospital about it, the response was “What do you care? Your insurance paid for it.” No–they didn’t pay for it, we end-users did. Well, I reported this incident to Medicare, who ultimately went back to the hospital. I blew the whistle.

Yeah, I had paperwork to fill out and follow-up to do, but it was worth it to screw back the hospital that screwed me.

• Make sure you receive a detailed statement.

Some insurance companies don’t even issue detailed statements to patients. My 82-year old mother has an HMO with Cigna in Arizona and gets no paperwork for anything—not even a doctor’s visit. When she bragged about how easy it is not to deal with paperwork, I pointed out that failure of disclosure enables these companies to charge and cheat whom or whatever they want. Undercover fraud.

• Take control over what is done, why it is done, etc.

When I was in the hospital last year for a bladder infection, there were so many specialists that came in my room and ordered tests. I demanded to know “why and what for.” These 5-minute doctor drop-ins cost an average of $400 each! The hospital charged $6 for each baclofen that I took, and wouldn’t allow me to bring in my own prescription from home, for the same med that cost 6 cents/pill! I take 5-6 of these per day.

There is something called the “Chargemaster” that hospitals use that is their grand price list for absolutely everything a hospital will charge you for. It is different from hospital to hospital and has no cost basis. Read this eye-opening, special-report article that was published by Time magazine if you are a Time subscriber: “Bitter Pill: Why Medical Bills Are Killing Us” by Steven Brill (March 4, 2013 issue) http://time.com/198/bitter-pill-why-medical-bills-are-killing-us/. It will knock your socks off.

Nursing homes and rehab centers are another area where there is much abuse with a patient’s medical needs and medical costs. My husband and I were caretakers for his grandmother, who spent the last ten years of her life in a nursing home. We took control quickly over all her medical needs when we discovered the who’s, what’s, frequencies and costs of the nursing home’s directives for Grandma’s care. We took over all decisions and we checked the costs incurred for everything, questioning inappropriate charges. And we sadly watched the other patients in the home who didn’t have someone overseeing their care get cheated and over medicated. Check out this AARP article: “Nursing Home Drug Outrage” http://bit.ly/1vxITrz  (Page 12)

 • While preventive medicine has its merits, common sense should prevail.

There are a lot of kickbacks between insurance companies, pharmas, and doctors. I’ll use my mother as an example again. Her doctor sets up a bone density test, pap smear, and mammogram every year. This is for an 82-year old woman who takes her required calcium/Vitamin D and doesn’t have a history breast or cervical cancer in the family??? Check out this article about kickbacks: “Payments to Doctors Revealed” http://bit.ly/1lAZ2pn.

Re: doctors, here is another interesting article: “Medicare Patients Can Now Do a Check-up on Doctors” http://bit.ly/1g9gtL9 . Consumer groups and news outlets have pressured Medicare to release the data for years. Now, Medicare officials said they hope the data will expose fraud, inform consumers and lead to improvements in care.

Everybody complains about the insurance companies and healthcare costs, but are their complaints followed by any actions to turn a wrong into a right? Ask questions and appeal over and over again until you win. Be a gnat on their back. Persistence pays off, like it did for Dave.

I had my own fights over the years with insurance companies over so many things for different types of equipment (like a stair glide) or a procedure (like trigger-point massage). They wouldn’t pay for trigger-point massage that would provide pain relief from spasticity, but they would cover painkillers—additive narcotics that alter cognitive functions and cause constipation. No thank you.

Even though I lost some disputes, I won some too. Here are my favorites:

Thirteen years ago, I sought reimbursement for a $2,400 pool lift for my swimming pool, which was denied. I had been doing aquatic therapy three times a week for twenty years—paying out of my own pocket–and pointed out that an hour of physical therapy that was of lesser benefit to me costs $200/hour. So twelve PT sessions would equal the cost of the lift, and I would have year–round therapy conveniently at my home for years to come. After numerous letters and three appeals, I was scheduled for a meeting with their Board. At the meeting, I had aquatic therapy documentation and representation from my doctor, the MS Society, and family members.

It was finally approved with the caveat that this was clearly an exception and it won’t happen again. Bottom line? We both won. I’ve used my pool for MS therapy an average of 120 times/year over the past thirteen years at my convenience and they saved a lot of bucks. At $200/hr. (probably more now), that equates to $312,000 of PT!!

This year, I won an appeal for a $1200 elevator lift on a new power chair. The lift was considered a luxury add-on, even though as a petite 5’3” person sitting, I couldn’t reach so many things in my house (like the stove and dryer knobs).

Small potatoes for them; big potatoes for me.

There is no question that we all need medical insurance today whether you have an existing medical problem or need protection from a possible future health problem. The exorbitant costs could leave an uninsured person bankrupt and out on the street in no time. With the baby-boomer population aging, our health care will be in real trouble if consumers don’t get involved.

Counting on our self-serving politicians and squabbling Congress won’t get the job done. But we can. Remember the Civil Rights Movement and the Women’s Suffrage Movement?

www.DebbieMS.com
Author/MS Counselor/Living with MS

Use Numbers to Increase MS Public Awareness

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“There is strength in numbers.”
June 19, 2014

Numbers can be powerful; they draw a lot attention depending on how they are presented, what is presented, and how big they are.

Maybe if the numbers about the multiple sclerosis population were given more attention, a larger draw of funds donated would be given for research to cure, stop, and restore this disease. And it would increase public awareness about MS.

What kind of numbers and what could be done?

1. Update the number of people who have MS.

The same numbers have been used for years, maybe decades–400,000 in the U.S. and 2.5 million worldwide. These same numbers are used by everyone—MS Organizations, Pharmaceutical companies, Health organizations, the government…
In March, 2006, there is a document that was published that said:

“Steps are now being taken by a federal agency and by the National MS Society… including a proposal to develop a national surveillance system for MS and the launching of a National MS Society Task Force on Epidemiology. These efforts should help to bring researchers closer to identifying a possible cause of MS and should bolster programs and advocacy on behalf of people who have the disease…Conclusions: It has been over 30 years since the federal government has seriously addressed the issue of incidence and prevalence of MS, so the interest on the part of the ATSDR in tracking MS is a welcome and major step forward.” http://www.medicalnewstoday.com/releases/40510.php

Sadly, it never happened. The perspective of 400,000 persons can seem miniscule relative to a population of 300 million in the U.S., and compared to other chronic illnesses and diseases.

Most people involved with the MS community would agree that the current numbers used are much understated. Is it due to people getting diagnosed earlier as a result of more sophisticated technology enabling faster diagnosing, or is MS becoming more prevalent? When it comes to the total number of people living with MS, does it really matter?

When I told people thirty years ago I had MS, there was so little awareness and many people had never heard of it. Nowadays when I tell people, most people tell me they know someone who has MS. I’m not alone in this observation.

2. If the estimated cost to support a person with MS were publicized, the public would be amazed.

Let’s face it, MS is an incurable disease right now, is progressive over time with increasing disability for most patients, and lasts a lifetime. What kinds of costs? Doctors, specialists, physical/occupational therapy, ongoing tests, medications/treatments, walking aids, adaptive equipment, adaptive housing, medical supplies, hospital stays, in-home nursing…the list is endless. Stated on the NMSS website, it is estimated that it costs upward to $70,000/yr. for one patient living with MS.

Who is footing the bill for all of this? If people had any idea of what it costs to help a person with MS (e.g. annually, over a lifetime…), or overall what an estimated cost would be to support all MS patients, I bet those outside the MS community would reach into their pockets more. For example, a power chair can cost up to $20,000; the annual cost of a DMD could cost $20K–$60K annually, a required MRI is at least $1,000, etc.

People don’t think about costs of a health problem until they are personally affected. Making the public aware of costs associated with MS would at least cause them to stop and listen.

3. How many people with MS are on Social Security, and what is their average age?

Information about Social Security generally attracts attention. Numbers about patients with MS on SS should be explained in conjunction with the realities of MS disabilities: educating what the disabilities are and what a person with MS goes through to get on disability. (see http://debbiepetrina.authorsxpress.com/?p=289 )

4. Graphs, like pictures, can be more effective than a thousand words. And what is shown on those graphs can raised eyebrows.

Some examples: a graph could show the percent of persons with MS with various symptoms (% with fatigue, bladder, vision, bladder, walking problems); a timeline of after diagnosis, how soon the average MS patient develops certain symptoms; the process and effect that drugs/treatments has on a MS patient; the rise of MS cases in the military.

Get graphic and show realism. There are times and places to show what people with MS can’t do; or, what it takes to help them to be able to do.

5. Show the combined efforts of MS activity on a national scale, more often.

Much independent activity by MS organizations, pharmaceuticals, MS clinics, are going on but the activity is usually within their own domain, on a local level, or in a specialized newsletter or magazine. Collaboration of all of these individual activities, or “the sum of the parts” would demonstrate the magnitude and dedication of MS. Again, there is strength in numbers.

The media thrives on numbers, human interest stories; everyone—“big or small”—can become an advocate alone or with an organization. And there are certainly enough celebrities out there with MS that I bet would participate in sharing the realities of this debilitating disease as they display their courage living with it at the same time.

Yes, getting these numbers and creating strategies would take money and time. But it would be an investment, with a great return on that investment in donations, grants, and funding.

These are my thoughts. Maybe I am wrong, and things are happening that I am not aware of. I am interested in your comments and your ideas about this subject and content.

www.DebbieMS.com
Author, MS Counselor/Living with MS

Please visit my website for more articles, videos, my book, MS information and resources.

Pharma Companies Invite MS Bloggers: Let’s Talk!

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“What Makes Us Tick?”

April 29, 2014

Talk is good. Attentive listening enables trust and knowledge. Interactive discussions generate ideas and resolves problems. All of these can be a catalyst for action.

On April 14, I was invited to attend a MS Blogger Summit, sponsored by two pharma companies—EMD Serono and Pfizer. Their objective? They wanted to reach out to us about our lives with MS and our blogging, and how they could continue to support the MS community. The summit was professionally arranged and conducted–from the accommodations, to the moderators/speakers, to the agenda. Interaction and information exchange among all participants was sought; it was achieved.

The companies wanted to listen and learn from the ten of us MS blogger attendees. They also included the caregivers that attended with some us of bloggers because after all, they are living with MS, too. The MSers were a diverse group. We came from nine different states, had varying degrees of disability and how long we lived with MS. The sponsors were just as diverse. They represented a variety of positions from communications, MS Support, and social media personnel to the top CEOs from both pharma companies.

Were they sincere? I believe so. They listened intently and questioned us a lot about what personally makes us strong in managing our MS, what inspires us to blog/advocate, what motivates us… They gave us a tour of their MS call support center with a follow-up Q & A session with the staff. The use of social media was discussed much—the types, role and content of the numerous platforms that are currently available.

I was honored to be invited and was gratified that finally MS patients were called upon (for a change) for OUR input. We are not celebrities, doctors, or non-profit MS associations. We are ordinary people living with MS. And we MS bloggers have been out there seriously interacting with others in the MS community.

The MS bloggers established an instant camaraderie; we are peers. Many of us have crossed paths in the social media world, but it was beyond words to describe what it felt like to meet in person. To touch, to hug, to look each other in the eye and read each other’s body language.

When the questions were asked about what makes us strong, inspired, and motivated to reach out to others while managing our own MS, the included: life, family, faith, hope, helping others, laughter… Each of us bloggers shared our personal stories.

But I have a theory and believe there is another major thing that we didn’t really touch upon. Most of the thousands of MSers I have interacted with over the past 34 years I’ve lived with MS have a unique thread about their personalities. I find that MSers are achievers, go-getters, ambitious, and doers. We have in inner desire to push ourselves, to be ambitious, to strive for perfection. These traits impose incredible stress on us; and anyone with MS will tell you about the negative impact stress has on our physical, mental and emotional states. Any type of stress causes MS symptoms to react; chronic stress can leave one incapacitated.

Could this type of chronic stress inherent to our personalities be a trigger to “bring out” our MS? At the same time, could this stress created by our personality traits produce the adrenaline that enables us to go on and move forward, in addition to the other things mentioned like life, family and faith?

The one evening/one day summit flew by and an additional day would have been better. It was important and great fun, but the intensity of the agenda and travel for most of us left us quite fatigued and overwhelmed. Nevertheless, we would all do it over again, and left well-connected and grateful when the summit concluded.

The following are some of my personal thoughts/concerns that I contributed to the event that led to some discussions and sometimes agreement. We bloggers were asked not to share the pharma companies’ propriety information, but were invited to share our insights publicly.

• The subject matter was based primarily for social media platforms. Why not step outside that platform and do more networking with other forms of media, such as TV or magazine that would include quality info? I’m not talking about a personal interview with a newly-diagnosed famous person “battling” MS, nor a 5-minute interchange between say, a neurologist and a journalist announcing a new treatment.

Genzyme, for instance, is currently doing a 24-city national one-half day MS event that includes a variety of information for the MS community in each area. Local professionals, speakers and support associations were involved to participate. The main focus was to provide information to those dealing with MS, not just their particular MS treatment. I was involved with the one in Phoenix in February, as a speaker/facilitator for a workshop entitled “MS and Your Relationships.”

• Much more work needs to be done in educating people about MS, not just making them aware of it. There are too many misconceptions about MS and it is too often forgotten because so many symptoms are invisible.

Sadly, the MS events (e.g. MS Walks) rely on friends/family and reach no further than that. Most bloggers agreed that both awareness and education is sorely lacking outside of the MS community. I shared a story about a hospital stay I had last year because of some serious MS complications. Most of the staff did not really understand MS nor its medical implications. This is a tragedy; it is a highly-rated hospital in Phoenix. I later invited myself to do a one-hour education program about MS to that hospital staff and they loved it.

• The numbers of persons with MS need updated. The same number of persons with MS has been used for at least the last eight years by everyone—MS Associations, pharma companies, doctors, etc. This is ridiculous. In addition, the number of people dealing with MS is staggering when you take into account family, friends, health professionals, etc. over a lifetime!! The financial impact of supporting MSers’ drugs, equipment, and health care is also staggering and affects most of our population. Saying MS affects 400,000 in the US gets us nowhere. Larger numbers speak volumes. There is strength in numbers—especially accurate ones.

• There needs to be more collaboration with all the players in the MS Community—the MS Associations, the pharma companies, the social media platforms, the medical field, etc. Everything seems disjointed. There is so much stuff out there and often information is inconsistent or incorrect. The disease itself is complicated and creates so much fear; this fragmentation or lack of unity adds to the complexity and fear. Where should a MSer start or go for the best help/info? Who/what should he/she trust?

Somehow, someway, these players need to come together. Maybe once a year—during March, the MS Month—on a main stage on a national level? An MS 2-hour TV education special? Again, there is strength in numbers, and education. But the point was raised, how do we do this? A main coordinator or a committee would need to be established.

• I look at social media as either being a best friend or worst enemy. There is a time and a place for it, and selection is critical. Part of my feelings is due to my age, part is due to the fact that I have only been involved with social media for a little over two years, and part of it is that I have had years of experience speaking with people about MS as a trained MS Peer Counselor in countless situations and circumstances. I have dedicated three decades of my life helping people dealing with MS as I myself lived with it. My personal motto is: knowledge and support = less fear. Sometimes social media platforms are biased, overwhelming in content and downright incorrect that causes more fear and stress.

An upside to it? Information is at your fingertips; it is an alternative to the frustrations of the phone world, where people/offices don’t answer, re-route you, don’t return calls, drop your calls, or answer your questions by reading from a manual/script.

• The CEOs of both pharma companies gave an overview of other MS treatments they were working on and opened the floor to Q & A. Nothing is planned that includes restoration of lost function or damage. For me, I say–hmm?! In a later interactive session, there was interesting conversation regarding the huge profits pharma companies earn from the drugs, where it goes or could go, and other personal financial dilemmas for MSers…

• Much emphasis by most in the room is that we should use social media to inspire others and offer humor, as positivity is essential for a person dealing with a chronic condition. I am certainly a proponent of this and do it myself in the MS community.

However, I suggested there needs to be some different support available besides inspiration and humor. I’m talking about the times when a person just needs to vent, be listened to, receive empathy (not sympathy). Let’s face it, sometimes things just aren’t funny or it isn’t the right time for inspiration. And info should be realistic as much as possible.

Maybe I feel this way because I was probably the MS Blogger in the room that lived with MS the longest. I have a club of “Old MS Vets” who have lived with MS for over thirty years. There is a difference in perspectives and extent/types of knowledge between those who have lived with it over longer spans of time, as well as those who have different levels of disability.

I must emphasize that the MS Bloggers at this event are valuable resources that offer a wide spectrum of support and things to offer through: inspiration, humor, research updates, event info, MS news, tips to help manage MS, etc. etc. etc. through many reliable sources. Four of us have written books, and all of us write, share and care. I find them trustworthy after meeting with them. Names and websites are below. A recent Facebook site, Multiple Sclerosis Bloggers and Writers was set- up, and is open to any one to check out and be included https://www.facebook.com/groups/1426077517643614/.

Thank you EMD Serono and Pfizer for the opportunity to participate in the MS Summit. The interaction/information exchange was extremely useful and interesting to everyone present. Hats off to these companies for taking the initiative to collaborate with us living with this lifetime disease and treating us so well and with respect. We MS bloggers are happy that these companies reached out to us in the MS community, the actual end-users. (Note: We MS bloggers use various meds/DMDs/treatments, and have different viewpoints about our treatments; most of us are not Rebif users. Treatments were not specifically discussed during the summit.)

Overall it was a win-win situation and I hope other companies and organizations helping the MS community will follow their lead. There is so much more that could be done.

MS Blogger Summit Participants

Dave Bexfield, http://activemsers.blogspot.com/
Jon Chandonnet, http://www.jonchandonnet.com/
Lisa Dasis, http://www.mslisasays.com/
Yvonne Desousa, http://yvonnedesousa.com/blog/
Lisa Emrich, http://www.brassandivory.org/
Laura Kolaczkowski, http://insidemystory.com/
Nicole Lemelle, http://www.mynewnormals.com/
David Lyons, http://www.everydayhealth.com/columns/ms-fitness-challenge/?dlpcode=sa
Debbie Petrina, http://debbiepetrina.authorsxpress.com/
Stuart Schlossman, http://www.wwwmsviewsandrelatednews.blogspot.com/

www.DebbieMS.com

60 Minutes Broadcast on the Social Security Program (Oct. 6, 2013)

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“A Half-Baked Story.”

October 31, 2013

Many of my followers know I have lived with Multiple Sclerosis for 33 years, am considered an advanced MSer, and am confined to a wheelchair. What 60 Minutes did to people like me in that story was a great disservice. It’s been almost a month since that broadcast, and I am still seething so much I felt compelled to write this post. (The broadcast link: http://www.cbsnews.com/video/watch/?id=50156574n)

It is bad enough we fight our daily battles with MS, but our valid fight for Social Security Disability benefits, insurance coverage, etc. just adds to our breaking backs and hearts even more. This same crap goes on with Medicare. I’ve been using a wheelchair for over fifteen years, yet the tedious process I just went through for insurance coverage by Medicare to get a replacement power chair is another example of pure ignorance by people who think how “easy it is” to get these benefits and fraud the system.

I believe abuse is easy for people with money and/or power, with high-end attorneys and politicians backing them and it does happen. But it is NOT so easy for average, middle-income Americans and others who struggle on their own to apply for benefits through difficult requirements over extensive periods of time. Where is OUR voice and OUR side in this Social Security Disability story?

Shame on you 60 Minutes and Senator Tom Coburn (who led this fraud investigation) for telling an incomplete and misleading story!

• I personally know what one has to go through to get disability benefits and it ISN’T easy, even with a lawyer’s assistance. Did 60 Minutes or persons involved with the HSGAC Senators Social Security Disability Fraud Report ask people like me—or the Social Security Administration and other reputable sources or organizations–about the application process, requirements, statistics, etc.?

I would love to go toe-to-toe with anybody about the social security disability process, what it takes to get approval for hard durable medical equipment from Medicare, or what it’s like to have an incurable, progressive, debilitating illness for life and lose a job! And do you think the ADA really protects or helps a disabled or chronically-ill person in the employment world?!

• Yeah, people who take advantage of a well-meant program like SSD and commit fraud is outrageous and hurts people like me. BUT, it’s not fair to damn the entire program, state facts, or create perceptions that are incomplete or inaccurate.
For example, “Widespread Fraud reported in Social Security Administration’s Disability Program”, was reported by both 60 Minutes and Doug McKelway of FoxNews.com (10/8/13). If you go within the Oct 7th HSGAC Senators Release Social Security Disability Fraud Report you will see this statement: “This investigative report details some very troubling occurrences within the Social Security disability review office in West Virginia,” Chairman Carper said. While we don’t have any evidence that this is more than an isolated case, one example of inappropriate actions of this nature is one too many. I welcome the opportunity to hold a hearing today examining a number of issues surrounding Social Security’s disability programs, gather facts and attempt to ascertain the truth.” WHAT?–An ISOLATED CASE??? Here’s the link to a press release of the report: http://www.coburn.senate.gov/public/index.cfm/pressreleases?ContentRecord_id=e2d6986b-9afe-4ac7-84f5-8a66092e8a04&ContentType_id=d741b7a7-7863-4223-9904-8cb9378aa03a&Group_id=7a55cb96-4639-4dac-8c0c-99a4a227bd3a&MonthDisplay=10&YearDisplay=2013

And how about this– Senator Coburn claims the SSD system (like Medicare) needs fixed, is broken, and stated: “What we found was collusion and most likely fraud and extortion in this particular office…we found is that the people inside the Social Security Office, not the judges, but the people actually making determinations do a pretty good job, but then it’s totally ignored by the (administrative law judges)…” and “what we do know is this judge, it appears, didn’t actually look at the cases, just decided them on the record without hearing the testimony from either the attorney, the individual, or Social Security or reading actually the full file on the individual’s claim.” Hmmm—so it’s not the SSA people or the SSA requirements causing the fraud, it’s the judges, lawyers and doctors behind this particular office…

• Do you know how damaging it is to those rightfully needing disability to hear programs like 60 minutes and politicians claim that people on welfare or unemployed are going on disability to survive? The term “Secret Welfare System” was used, and it sticks like glue. Yep—all for a good story and personal gain at the expense of people like me.

• Do you know how many of us who are disabled or chronically ill hate being on disability, who want to get better, who want to work? Quite frankly, I am tired of the growing stigma that people would rather receive a government entitlement than work. This broadcast and report just adds to this stigma.

The National Multiple Sclerosis Society, a highly respectable and reputable organization, sent this letter to 60 Minutes immediately following the broadcast:

Messrs. Jeff Fager, Bill Owens and Steve Kroft
60 Minutes
CBS
524 W 57th St
New York, NY

Gentlemen:

CBS’s 60 Minutes deservedly prides itself on high journalistic standards and sharp investigative reporting, and for decades has played a valuable role by exposing serious flaws in otherwise well-regarded institutions and programs. However, the CBS 60 Minutes broadcast on the Social Security disability program that aired last Sunday, October 6th, painted a misleading and inaccurate picture of an important program which serves as a vital lifeline for millions of Americans with severe disabilities and chronic conditions.

We wholeheartedly agree that it is essential to investigate, discover and end abuses and misspending in government programs including Social Security. The Social Security Disability Insurance program is critical for people with disabilities and chronic conditions and we commend efforts to find fraud and prevent those not deserving its services from abusing the system. However, by highlighting only alleged fraud, without the broader context of the millions of individuals who rightly receive and so wholly rely on benefits, your report inaccurately cast the entire Social Security disability program in a bad light.

The single most authoritative source of information on the Social Security disability program’s policies, operations and trends is without question the Social Security Administration itself. A thorough and complete presentation must include the perspective of the agency’s officials and experts. Another valuable and important source of information on Social Security disability programs that was overlooked are people with disabilities themselves, who have been through the rigorous application process, with six in ten being rejected. The Social Security disability standard is incredibly strict; demonstrating eligibility requires extensive medical evidence, and even people with severe disabilities can wait months if not years to receive benefits. Many individuals are denied despite significant disabilities and chronic conditions such as multiple sclerosis (MS), the most common neurological disease leading to disability in young adults.

Media coverage – particularly from a respected program such as 60 Minutes – can have real consequences and can lead to needless harm to an extremely vulnerable population. The wellbeing and economic security of millions of people with disabilities and their families – for whom Social Security disability benefits are nothing short of a lifeline – hang in the balance. We hope that 60 Minutes will supplement its reporting on these vital programs with completeness – by providing needed context, balance and essential facts about the disability program from additional, important sources.

If you have any questions or would like to possibly speak with someone living with multiple sclerosis who receives SSDI, please don’t hesitate to contact me by phone at 202-408-1500 or by email at Ted.Thompson@nmss.org or reach out to my colleague Arney Rosenblat, whose contact information is below.

Thank you for taking time to consider our view on this issue.

Sincerely,

Ted Thompson
Vice President, Federal Government Relations
National Multiple Sclerosis Society

Arney Rosenblat
Associate Vice President, Public Affairs
Arney.Rosenblat@nmss.org

Thank you, NMSS, for speaking accurately and clearly on our behalf. However…

…is anyone listening? Did 60 minutes respond? Are those of us who are truly disabled going to be fairly represented or properly defended? Are there any planned follow ups?

Stayed tuned…or is it just a waste of time and more of the same to come?

www.DebbieMS.com