WHAT PATIENTS WANT PHARMA TO KNOW

There was a time when “Big Pharma” was thought by many to be cold and impersonal, oblivious to patient need, and consumed by greed.  Though this belief lingers in some, the times are indeed changing.  In recent years, as patient demands to be more engaged in their own care have increased, major pharmaceutical companies have made genuine attempts to become more patient-centric and view patients as collaborators rather than merely consumers.  And they are making huge inroads.  Increasingly, “Big Pharma” is reaching out to patients in an honest attempt to meet their needs and include them in the design and decision-making processes.  In light of these recent efforts to engage patients, I thought it prudent to share a few insights into what patients want pharma to know.

To begin with, we would like you to understand we are not simply statistics.  We are not numbers on a page, “cases,” or sterile, unaffected participants in the process.  We are, above all else, human beings with hopes, dreams, and goals.  We have families, loved ones, and friends who count on us and with whom we wish to remain.  We long for acceptance and understanding, and we have a passion and desire to live full, healthy, normal lives.  But our debilitating illnesses deeply impact us and fill us with fear as to how our futures might be limited or cut short.  Indeed, they alter every aspect of our lives.  We need your help in regaining what our illnesses have so cruelly stolen from us.

We long for cures above all else, of course, but shy of that, we seek treatments which improve the quality of our lives – quality of life as we define it for ourselves and not as characterized and imposed upon us by detached observers.  We urge you to hear us and address the characteristics of our illnesses which matter most to us.  We need you to recognize the symptoms most significant in our lives and work toward alleviating those symptoms with treatments convenient to our lifestyles and befitting of our needs.  Further, we seek for us and our caregivers to be included in the drug development process from the very beginning so you might incorporate our wishes and our requirements wholly into your design.  Likewise, we desire the opportunity to provide feedback all along the way and to be empowered to drive modifications in the process when appropriate.  We also beseech you to acknowledge our treatment expectations and honestly address how realistic you believe these to be. We do not need false hope.

We wish you to know we are educated, knowledgeable, engaged in our own care, and willing to connect and share our experiences.  You need only reach out to us.  It is sometimes difficult for us to reveal personal information and discuss the most intimate details of our lives, but we are willing to do so with the promise of respect, some level of privacy, and the hope of better treatments.   We are likewise willing to participate in clinical trials but frequently have difficulty finding them and comprehending the sometimes lengthy and complex requirements for participation.  We have false assumptions about the nature of trials on occasion, fail to understand what costs and burdens we will bear, worry about travel demands and insurance issues, and fear what may happen to us if we abandon our current treatment, receive a placebo, or suffer harm from the test medication.   You can help alleviate our concerns by simplifying requirements, reducing our burdens, tailoring trials to our immediate needs (to the extent possible), assuring us of quality medical care throughout the process, emphasizing with our fears, and demonstrating compassion.  We need assistance in finding available trials and would be most grateful if you would provide us with full, upfront information about what trials entail as well as a summary of the results of said trials.  We wish to know our participation mattered and we wonder about the effectiveness of the drugs we so kindly tested.

Most of all, we seek constructive, quality engagement between patients and the pharmaceutical industry.  We value your willingness to include us in your endeavors and incorporate our input into your drug development processes.  We hope you know how meaningful your efforts in this area are. 

I conclude with my personal story so that you might know the agony which many of us endure and hold our stories in your hearts.  You have the power to touch and transform lives, and you are our best hope of regaining that which has been so cruelly wrenched from us.  We matter.  You matter.

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LIFE FOREVER ALTERED

In February 2014, I spent a week in the hospital and was diagnosed with gastroparesis.  I am guessing most people have never heard of this; I know I had not, prior to being diagnosed.  Gastroparesis means “paralysis of the stomach” and is marked by debilitating symptoms such as nausea, vomiting, stomach and abdominal pain, reflux, early satiety, and severe bloating.

Since diagnosis, my life has been altered in ways I could not have imagined – overnight.  One day, I was eating at buffets, and the next day, I was unable to tolerate all foods and liquids.  I was hospitalized with severe pain and vomiting, put through a battery of tests (including one particularly terrible one where they forced a tube down my nose and pumped my stomach), diagnosed, and sent home with only a brief explanation of my illness.  For the next few weeks, I was on a liquids-only diet and told that I would gradually work up to soft foods and solids.  Unfortunately, nothing like that has occurred.  I am now able to eat some soft foods, in tiny amounts, but it is clear to me that I will never again be able to eat “normal” foods in “normal” amounts. 

At first, I told myself I would not let this disease define or control me – it simply WOULD NOT be the center of my life.  But as time passed, I began to see how foolish that was.  Every single day, every second of every day, I think about food.  I see it, smell it, cook it, and feed it to my family; but I cannot have it.  I look in the mirror and see a skeleton.  I try to eat even small amounts of food, and I am in agony.  I am weak and fatigued to levels I did not think were possible.  Some mornings, I do not think I have enough energy to get out of bed.  I can barely concentrate and function enough to do everyday tasks.  And almost every night, my husband must help me up the stairs to bed because he is afraid I might fall down those stairs.  My 13-year-old daughter has seen me vomiting, screaming in pain, lying on the floor crying, and on the verge of passing out.  At times, it has frightened her so much that she has asked me to get “Life-Alert.”

I grieve over the fact that I can no longer travel or get out of the house for much of anything – over missing family events, my daughter’s activities, picnics, concerts, and other such functions.  I worry that I will not get to see all the significant milestones to come.  I am not on the verge of death today (at least I do not think so), but when I look in the mirror, I realize that people like this do not have long lifespans, and it bothers me.  I worry about what will happen to my family when I am gone.  I fear my daughter’s reaction to my death and the consequences that might result from her growing up without a mother.  I want to be there for her when she is sick, scared, or needs advice.  I want to see her turn "Sweet Sixteen."  I want to hear about her first kiss.   I want to see her grow up, graduate, get married, and have children.  I want to know that she has a good career and a loving family.  I cannot bear thinking about the pain my death will cause my husband, and I am concerned that he might not be able to function when this occurs.  I want to grow old with him.  Facing the strong possibility that none of these things will occur is anguishing. 

I get frustrated because people do not understand how my life is affected by GP.  If you saw me on the street, you would likely not realize I am sick.  I do not look sick.  People frequently ask me if I am better now, and I cannot seem to convince them that I am never going to be “better,” not in the sense they mean.  I am constantly told I “just need to eat,” or that if I would try yogurt, natural herbs, or “get some more rest,” I would heal.  My own doctor labeled me as anorexic and advised my husband to “watch me.”  The lack of understanding is incredible, and though I know people mean well, it still bothers me.

I am angry because I am a control freak, and I do not like being a slave to this disease.  I do not like being “helped” with everyday tasks and always having to rely on others for aid.  I have screamed at, slapped, and pushed my husband away for simply trying to assist me.  I have thrown things (including food) across the room in fits of anger.  I have intentionally gone without eating – even though I know I should not – just to “show” this disease who is in control.  Mostly, I am angry because I do everything I am supposed to do – eat the right foods, exercise, and ingest the known medications – and I am still sick. 

There are times when I am in such agony that I can do nothing but cry – lie on the floor and beg God to just let me die.  He does not – and I am thankful for that.  I think about others who have this disease who are much worse than I am.  I know many people who have sought treatment for dehydration, pain, and malnutrition, and who have had to resort to feeding tubes, surgeries, or other extreme measures for nutrition and relief from debilitating symptoms.  I sometimes look at them and think that this will surely be my future, too, and it scares me. 

I do not understand why I have this disease, and perhaps I never will, but what I do understand is that it is somehow important for me to share my experiences and let others know that despite my challenges, I mostly have a good attitude about my circumstances.  In fact, I believe I have been blessed because of my illness.  Since my initial diagnosis, I have become heavily involved with online gastroparesis support groups and have created and now administer an advocacy group that seeks to foster awareness and change for my community.  I feel connected and bonded to others in ways I would have never dreamed possible a few years ago. 

I have discovered a whole new purpose and meaning to my life.  Over the course of my journey, I have seen unimaginable suffering and need.  I am overcome with compassion and concern for the people I have met, and I am likewise overwhelmed by the kindness and support they have shown me over these past few years.  I tell you, honestly, every person I know has helped me in some way.  They have visited, called, helped with chores and tasks, and simply cheered me up with their stories.  Please do not ever be convinced you can do nothing to help or that you do not matter. To those who are struggling, your efforts to understand, your cheerful words, your helpful attitude, and simply your willingness to contribute and be present make all the difference in the world.  

LEFT BEHIND

*Note: The following post is not meant as an indictment of men. Pronouns are chosen for convenience only and reflect the majority of cases I see in the groups.*

One of the issues I see quite frequently in our Gastroparesis support groups yet which remains a rather taboo subject outside our groups is spousal (substitute: partner, family, significant other if you wish) abandonment.  I realize many factors weigh into a divorce/separation and that it is perhaps not as easy as saying, “Stay with your spouse through thick and thin,” but the effects of such desertion on the chronically ill are devastating and desperately need to be addressed.

Many of those forsaken were married for years before being cast off.  They built a life centered on family and counted on their spouses for emotional support, physical comfort, and companionship.  They never held jobs, held low-paying jobs, or had to leave their jobs once illness hit.  Some delayed educational pursuits to care for their families and never got around to finishing their degrees.  Many agreed to stay home and raise children or work part-time on the promise that the spouse would continue to work and provide a family income.  Some turned down high-paying occupations and sacrificed their own ambitions to further their spouses’ career goals.  They were in what they thought to be committed relationships with common goals.  They established mutually agreed upon objectives meant to benefit the family as a whole.  Such commitments were, admittedly, made in the absence of illness, hardship, and crisis.  There was no plan for what-ifs.

Then, when illness struck, all their grand designs began to crumble.  Perhaps things continued on as before for a while – even a good long while – before one spouse decided he no longer wished to live his life “tied” to a sick partner.  After all, this was not what he “signed up for” and was no longer “fulfilling.”  There are all sorts of justifications for abandoning one's spouse: “She is not the same person I married.  She is always sick.  She can’t go anywhere and can’t take care of the kids or help with the chores like she used to.  I do everything.  We can’t even get romantic anymore.  Who wants to live like this?  Why should I be held to this marriage when she can’t hold up her end of the bargain?  Don’t I deserve happiness?  Don’t I deserve a decent life?” And so, one day, despite years of togetherness, tenderness, and shared dreams, the spouse walked out the door.

You may think me judgmental – may even side with the spouse who left – but I see the end result of this type of thinking, of this rejection and callousness, of this “me-first” attitude.  In our groups, we struggle to pick up and reassemble the pieces of those left behind.  The abandoned spouse is devastated emotionally and spiritually and questions whether she was ever really loved in the first place.  She wonders how someone she once thought devoted could so easily reject her, their family, all their beautiful dreams.  She cannot properly care for herself and her children, physically or financially, without spousal assistance.  And though perhaps once capable of pursuing a career (or an education), she cannot now find gainful employment due to her debilitating illness.  Worse still, she loses her insurance coverage once her husband leaves and cannot afford her necessary (and yet costly) medical care.

Yes, there are options… none ideal.  There are public assistance programs for housing but these often come with long waiting lists and the dwellings are sometimes located in less-than-desirable areas.  Disability might be a possibility, but it is frequently difficult to qualify and takes years to obtain approval.  There are also programs (such as SNAP and food pantries) designed to help with food costs, but many times, these do not cover all expenses incurred or items needed for care.   Medicaid may be an option for healthcare, but the approval process can take time and, even once in place, procedures and treatments can be delayed due to processing time.  It is often difficult to locate providers who accept this form of reimbursement as well. 

And, so, a downward spiral begins.  Mentally, emotionally, and physically drained from illness and abandonment, the affected spouse slowly loses all for which she worked so hard.  She is truly alone.  She has no emotional or physical support.  Her home is gone.  Her family is split.  Her medical care is non-existent or subpar.  Her condition begins to deteriorate due to the stress resulting from lack of assistance and care, and she finds herself in a dark abyss with little hope of climbing out unassisted.  This once optimistic, vibrant, dream-filled soul sees no bright future and abandons hope.

Now, I do not pretend to have the answers to this very real dilemma.  We live in a free society where marriage is an at-will contract and taxpayers reject ideas of further assistance to the “lesser” among us.  We have rights, and rightly so.  But as decent, caring human beings, I beg of you to consider the consequences of your choices, and I ask you: What happened to commitment, to devotion, to promises?  Where is your sense of responsibility for your fellow man?  Where is your compassion?  How can you so easily ignore the plight of those around you, perhaps people you once cared for deeply – loved, who have struggled to keep their heads above water and are now drowning in misery and hardship?  These people are in need and cannot succeed without you.  What do you owe these souls?  Much.  Much.  We are all connected, all intricate and valuable parts of this society, this world, and a similar fate could befall any one of you at any time.  Open your eyes.  Unbolt your hearts.  Extend your hands.