Medical Fragility & Pandemic Planning

This post may be disturbing to some readers, but the implications of the H1N1 pandemic for children and adults with MECP2 Duplication Syndrome, who are epileptic, or who are otherwise medically fragile. The current concern about the H1N1 pandemic is a difficult topic for families of children with MECP2 Duplication Syndrome or other disabilities associated with medical fragility.  Families who are already challenged  with significant health needs on a daily basis may have difficulty even thinking about the potential complications of a pandemic. Although this is a difficult topic, it is a topic that needs to be carefully considered. Although the H1N1 virus has not been associated with severe illness in most individuals, the Center for Communicable Disease’s September 4, 2009 edition of Morbidity & Mortality Weekly Review Report states that 67% of the children who died from H1N1 in the US so far are children with significant pre-existing health conditions (almost all of these were developmental disabilities).

In addition to the direct threat of influenza infection, children and adults who are medically fragile, may be significantly disadvantaged  if the influenza pandemic overburdens the health care system. Of course, there is no certainty that this will occur, but some experts believe that we could face this situation within a few months as the flu season progresses. If it does occur, it would result in triage measures being enforced shutting out medically fragile individuals out from access to health care resources that become scarce such as mechanical ventilation or ICU beds. Canadian Guidelines (2008) for an influenza pandemic would exclude individuals from critical care if “any of the following is present:”

D. Severe baseline cognitive impairment

E. Advanced untreatable neuromuscular disease

H. Severe and irreversible neurologic event or condition

The American Triage guidelines published in the journal Chest in May 2008 are almost identical, excluding individuals with:

D. Severe baseline cognitive impairment

E. Advanced untreatable neuromuscular disease

G. Advanced and irreversible neurologic event or condition

Other countries are expected to implement similar protocols. Simply put, if critical care services are overburdened by a pandemic, they can be expected to be denied to medically fragile children and adults with developmental disabilities.

What families can do?

First, discuss this with your physician or your family member’s physician before a possible crisis occurs. What can you expect? What can you do to prepare?

Second, try to minimize your family member’s exposure to H1N1. Of course, this is not easy to do. If you become sick, try to limit contact and if you must continue as caregiving, wear a mask.

Third, consult with your physician, but vaccination when it becomes available will likely be helpful for medically fragile individuals. While there is some question about the effectiveness of vaccines in individuals with immunosuppression, it probably is helpful for most. Also, vaccinate all family members and caregivers. If you don’t get influenza, your family member is less likely to get it.

Fourth, plan to be able to provide the best home-based care for your family member.This may be a topic for comments and or another post. Have adequate prescription and OTC medications on hand.

Fifth, if you suspect that your family member has influenza, get medical treatment immediately. There is reason to believe that antiviral medication in the first day or two can make a substantial difference and while antibiotics do not affect viruses, bacterial co-infections (S. aureus, S. pneumoniae, and S. pyogenes) have been found in many of the most serious or fatal cases. Early treatment can improve the prognosis.


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2 responses to “Medical Fragility & Pandemic Planning

  1. The equal protection clause of the US Constitution and the anti discrimination provisions of federal regulations provide some protection from discrimination against mentally fragile individuals. However those laws are not self executing and do not presently require automatic measures to prevent discrimination.
    Thus it is necessary to take positive steps to prevent foreseeable discrimination through litigation and administrative or regulatory advocacy.
    The time for action is now.

  2. I agree with Sam. If someone wants to challenge this, the time is now. The situation in which someone with cerebral palsy, multiple sclerosis, intellectual disability, epilepsy, or other disabilities is denied critical care may never emerge, but if it does the need will be urgent and challenges move slowly. Furthermore, while some triage may be necessary under certain conditions, the model policy is so vaguely stated that it is likely to result in unjustifiable medical discrimination.

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