I’m Raising a Kid With Microcephaly. Here’s What the Media Gets Wrong.

https://goo.gl/mwumtH

I’m the mom of a microcephalic kid. I am also a news junkie. That’s been a tough combination lately.

I adore Edmund, my kid with microcephaly. I shouldn’t need to say that. In general, moms loving their kids is a given.

I am all too aware, however, that people believe he’s an affliction who must be borne, rather than a source of joy and laughter and an occasional pain in the ass—just like my two typical kids.

The endless pounding of Zika stories, and the descriptions of the grim futures that await the families of microcephalic children, chip away at a façade I’ve built by surrounding myself with friends, family, and a community who value and love my son.

On a recent morning, I had the pleasure of reading this lede in The New York Times: “A baby with a shrunken, misshapen head is surely a heartbreaking sight.”

If you are a parent, I ask you to sit back and think about that for a second. Think about one of your kids being described in those terms in the paper of record. Terms that are usually used for the hulking villain of a gothic novel, not an infant. And further as “a heartbreaking sight.”

As it happens, I saw my kid this morning. He’s 6 years old, no longer a baby. When he caught my eye, he grinned at me and signed, as he does many mornings, “I love Mommy. Mommy loves me. I love hats.”

We’ve never been sure why he’s so fond of hats, but there it is.

Edmund may be many things, but here’s what he isn’t: a heartbreaking sight.

This isn’t because he is one of the 15 percent of microcephalic children who develop typically. His microcephaly is part of a cluster of medical problems that stem from a rare genetic syndrome, Cri du Chat syndrome.

He has multiple intensive needs. He’s non-verbal, and communicates with a few signs. He uses a wheelchair and requires a feeding tube for nutrition.

Rather, it’s because I love him for the person that he is, not the skill levels he achieves.


A Win for Hypertension Intervention in Black Barbershops

African American men got better hypertension control from an intervention involving specialty pharmacists visiting their barbershops than if they were just encouraged to seek medical care from their usual doctors, a cluster randomized trial showed.

Mean systolic blood pressure dropped 27.0 mm Hg after 6 months in men assigned to barbershops where barbers encouraged patrons to meet with specialty-trained pharmacists who prescribed drug therapy under an agreement with the participants' doctors, compared to a decline of 9.3 mm Hg in systolic pressure among men assigned to control barbershops, where the barbers merely promoted lifestyle modification and physician visits.

Mean declines were 21.6 mm Hg greater with the intervention (95% CI 14.7-28.4), Ronald Victor, MD, of Cedars-Sinai Medical Center in Los Angeles, and colleagues reported in the New England Journal of Medicine and simultaneously at an American College of Cardiology meeting late-breaking trial session in Washington, D.C.

The blood pressure goal of 130/80 mm Hg or less -- fitting with the new 2017 American blood pressure guidelines -- was achieved in 63.6% of intervention versus 11.7% of control groups (P<0.001).

"Among black male barbershop patrons with uncontrolled hypertension, health promotion by barbers resulted in larger blood-pressure reduction when coupled with medication management in barbershops by specialty-trained pharmacists," Victor's group concluded.

As it stands, non-Hispanic black men have the highest rate of hypertension-related death of any racial, ethnic, or sex group in the U.S., they noted, adding that black men have less physician interaction than black women and lower rates of hypertension treatment and control.

"The study builds on previous studies that demonstrate black barbershops can be effective venues for interventions to lower blood pressure in black men. Previous studies have also demonstrated that pharmacist-led interventions to improve hypertension control can be effective," commented Joseph Ravenell, MD, of NYU Langone Health.


About Us - Little Lobbyists


As parents of children with special healthcare needs whose access to healthcare is on the line, we have been thrown into the world of political activism. It’s not a world we envisioned for ourselves, but when it comes to our children, the only choice we have is to keep fighting. Since Republican leaders have introduced legislation that will profoundly affect our families in the worst way, we have been dedicating our time to reaching out to them on Capitol Hill.

We are collecting and sharing stories from families from around the country, who, like ours, rely on access to affordable, quality healthcare to keep our children healthy. We have been taking those stories to Capitol Hill to help our country’s leaders better understand our children and the devastating impacts the proposed healthcare bill would have on them. Our children have been serving as ambassadors, on behalf of other children who are unable to come to Washington D.C., to help our leaders understand that kids who have complex medical needs are real children who aren’t that different from other kids.

Here, we’re sharing the stories of the kids we’ve met along this journey. They’re just kids…but kids who happen to have specialized and complex medical needs. We invite you pull up a chair, get to know our children, and learn why access to affordable, quality health care means everything to our families.


End of Life Washington” Promotes Directive to Prevent Feeding Assistance to Those with Dementia

(The following continues coverage and discussion of an initiative regarding efforts to let dementia patients “refuse” assistance to eat. We discussed this in November 2017. You can check out that blog post here.)

Journalist Mike Bassett has a new online article out in Today’s Geriatric Medicine. It involves the latest initiative from “End of Life Washington” (EOLWA). As mentioned above, it’s been discussed on this blog before.

While disability activists and others in the social justice community have been rallying around the threats to the ADA, Medicaid, Medicare and other vital parts of the social safety net, organizations like EOLWA still see our biggest problem is that it’s allegedly too hard to die. In this case, the allege that too many people with dementia are being fed against their will.

Bassett’s article in Today’s Geriatric Medicine is very good. He includes the voices of reps from EOLWA, Alzheimer’s Association – and me, representing NDY.

As we’ve seen over the past few decades, narrow initiatives like this act as door-openers, in which a narrowly-defined “refusal” of life-sustaining treatment expands over time both in terms of the groups who may exercise this “right” and the level of proof a surrogate needs to “exercise” that right on the behalf of someone who cannot communicate those wishes themselves. What makes this initiative a bold step is that it shifts manual assistance in eating and drinking as a form of medical assistance – a radical difference in framing something that has historically viewed as basic care.

It’s vitally important that anyone who needs assistance to eat, who supports someone with those needs, or loves someone with those needs to keep this issue on your radar. It’s headed your way, sooner or later.


Bills to replace No Fault with pure tort liability insurance system introduced

I've been around long enough to remember what pure tort liability was like before no-fault. Pure tort means no meaningful rehabilitation for injuries because it takes years to get the money to pay for it.....

https://goo.gl/gvt7S5

House Republicans, including Rep. Lana Theis (R-Brighton), chair of the House Insurance Committee and sole sponsor of the defeated Theis-Duggan-Leonard No Fault plan, introduced a package of bills, including House Bill 5517 and House Bill 5518which, if passed, would make the following changes to Michigan’s auto insurance laws:

  • Michigan’s 45 year experiment with No Fault ends.
  • Michigan becomes a pure tort liability state, meaning that car accident victims can sue an at-fault driver who causes a car accident for all of their economic and non-economic losses. There will no longer be a threshold test for pain and suffering claims as there currently is, and the wrongdoer driver is now responsible for all of a victim’s medical expenses, attendant care, wage loss and vehicle damage that he or she causes. The majority of states in the country today are considered pure tort liability states.
  • Even though drivers would no longer be entitled to catastrophic injury coverage after a car crash, they would still have to pay annual assessments to the Michigan Catastrophic Claims Association.
  • The only auto insurance that Michigan drivers would be required to carry is liability insurance with 20/40/10 policy limits.

On Monday, I wrote a more critical analysis of what No Fault repeal will look like, and who some of the winners and losers may be if a No Fault repeal is enacted and Michigan becomes a pure tort liability state.