Our SBS Story

Advocacy-Why does speaking up matter?

Why do we share Camden’s story?

It hasn’t always been an easy task- at times writing took every last ounce of energy that I had left at night- but 1) it matters for support, being a special needs parent can be very isolating 2) It matters for education, because someone somewhere might happen across one of our posts and find answers to questions they desperately need 3) It expands awareness for short bowel syndrome and rare disease to a community and readership beyond our own.

Did you know that short bowel syndrome is SO rare that we have to educate many healthcare providers on Camden’s critical care needs? We had to educate our insurance provider, our community, our therapists, and the list goes on… We are not alone, others in the SBS community around the country and the word are doing the same- this is the life of rare disease, ‘this’ doesn’t come with a manual- this isn’t written in the laws or the codes or … many places beyond a few medical journals, specialized research labs (here’s looking at you Boston Children’s) and hospitals.

Why is a patient/caregiver’s voice important? This is because the collective of many individual voices gives purpose to a cause… there are not enough voices for many rare diseases to make an impact in our communities, in medicine, in politics- so together we make for a larger impression-so that we are heard and so that we aren’t forgotten.

Take all underlying political motives aside (as these are always assumed)- this is unfortunate… unfortunate because the political process is who controls healthcare in this country and this is the only place to speak up for Camden’s needs… no one else can make (or break) the changes that Camden needs to support his rare and hugely complex needs. So when I speak- it’s not democratic, it’s not republican, it’s not libertarian it’s nothing but a true voice of Camden’s needs to WHOEVER can make it happen and who will listen, to whomever has compassion.

If lifetime limits were imposed on medical policies… Camden would have likely reached his lifetime limit before leaving the NICU at 3.5 months.

Camden had a pre-existing condition on day-2 of life. Right now he is covered through our family policy- we are covered only by a private health plan. If a pre-existing condition becomes a factor for denied health insurance… a lost/changed job will leave Camden without the coverage that allows him to be treated at Boston Children’s Hospital (the care that saved/continues to save his life)… and… one day Camden will be an adult and he’ll take on his own policy… what happens then… the condition still exists.

The specialized care of many chronic/rare disorders are only researched and medical intervention applied with expertise at a small number of hospitals- i.e. for short bowel syndrome the most expertise is at Boston Children’s Hospital… AND many Medicaid plans don’t allow for transfers out of State and or require lengthy burdensome processes for families to possibly facilitate a transfer… so if you have Medicaid.. you might not get the care… if States manage the care.. then what? We don’t have Medicaid- but I speak from the experience of others.

Finally, I’ve seen extensive wait lists and denials for those who could truly use the support of Medicaid for their families. Families working to make ends meet, families in crazy amounts of debt because of care they’ve incurred for their children- STILL being denied Medicaid benefits or being forced to wait. Who said that there was time?

So, these are facts. This is Camden’s story. This is our world… and I share…. for all of these reasons…. I share. I’m not politically charged, I’m Camden’s mom. I’m a friend. I’m an advocate and I see a lot… much of which many people don’t…. honestly… you wouldn’t see these things unless you were in our world- that’s ok- but please listen- because if it were you- you’d want someone to listen too. We are all immune until it happens to us- the only common denominator is compassion- and as I mentioned before this issue is unfortunately forced into politics because of the way our (USA) and most of the world’s systems work. It is what it is. Not everyone has an agenda. Well, actually… in full transparency, I do … it’s Camden.

So we did share our story with our State, because it’s our right, because it’s our responsibility to speak on behalf of the stories that aren’t seen and because we care about Camden… not only today… but tomorrow too.

The picture attached is from when Camden’s story was shared on Capital Hill in DC. We’ve done our part, in honor of Camden. In honor of RARE. In honor of medical complexities. CorkerPic (3)

XO,

Camden’s Mom

TN_Camden (1)

 

 

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