Why need it?

Keeping in view all the facts and figures related to spina bifida, a child with this congenital disability, presents medical and social costs that people should know about. The costs may be non-medical or medical:

Non medical Costs:

  • Cost of a person for care taking
  • Cost of a special diet
  • Special educational expenses
  • Traveling expenses
  • Expenditures for inpatient admission
  • Outpatient services
  • Cost of medication
  • Cost of hospital staff (doctor or staff nurse)
  • Surgical costs (in case of SB surgery)

Medical Costs:

Added together these items cost so much that they cannot be afforded by an average family. In such cases parents need Government or private support in the form of insurance. Insurance may be of different types such as travel insurance, health insurance or life insurance.

spina bifida health insurance, spina bifida medical insurance, medical insurance for spina bifida, health insurance for spina bifida

Economic Burden

The annual cost for a patient with spina bifida was reported a[1]. A large part of the cost occurs in childhood and newborns with SB costs $74 million per year in America. The cost continues to be high as the patient grows to an adult [2]. In adulthood half or sometime more than half of the costs are due to secondary conditions such as renal stones, ulcers and urological infections related to spina bifida [3]. Perhaps 33% of the costs are related to mobility, wheelchair, ambulance, communication and other hearing issues [4]. You can read more in detail about the costs here.


Spina Bifida insurance programs may be part of the employment benefits offered by a company to its employees (often with family coverage).  A large number of people (approximately 46.3 million in 2008) were reported uninsured because of unemployment [5]. So, health insurance can be very beneficial for patients of spina bifida.

A large proportion of healthcare for people with this genetic disability (approximately more than 420 programs) are authorized in the US under the name of Special Need Plans (SNPs), and a large number of proposals are submitted to the US government each year. Insurance companies provide different insurance plans for the affected patients such as:

Health insurance- to provide them with health care facilities, medication, expenditures for surgical procedures, hospital costs, etc.

Traveling insurance– it is related to patients’ ambulatory expense, wheelchair cost and attendants’ traveling bills.

Life insurance– a wide and extensive plan covering a patients’ whole life

New types of insurance plans

High deductible health plan: This plan provides high deductibles as compared to older insurance plans.  High deductibles exclude low cost items but provide coverage for major issues and big expenses.

Limited Benefit plan: As compared to a high deductible plan it offers limited benefits in terms of support for routine follow up. This plan is more beneficial for lower income level families.

Discount Medical Card:  This is the most popular option among health care providers. The Card is not an insurance policy but it provides a discount from health care providers.

Benefits of insurance plans

  • These programs inform people about their health risks and also provide support financially.
  • A large number of financially limited patients are admitted to hospitals every year due to these SNPs.
  • Insurance gives the patients a wide range of treatment opportunities.

Disadvantages of Spina Bifida Insurance Plans

No doubt, insurance offers a lot of benefits to the patients with SB; however, it may have some disadvantages as well. Disadvantages of insurance usually occur while choosing the insurance plans, i.e., traveling plan, medical plan or the life insurance plan.

  • Sometimes people take too much time to decide insurance while the birth defect worsens.
  • Some health insurance firms are very expensive even for self employed so that they struggle to make payments.
  • Some people can afford health insurance but cannot afford co-pays offered by insurance plans because of their low or even average income.
  • People having large families are unable to continue their insurance plans due to company’s term and conditions.
  • Some insurance firms do not cover the charges for the patients’ tests and necessary surgical procedures; therefore, people refuse to continue with the insurance plans. Such issues worsen the birth defect or sometime lead to the death of patients [6].

One report brings to light that more than 40% of insured people say that their plans do not cover their needs [7].

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  1. Robbins JM, Bird TM, Tilford JM, et al. Hospital stays, hospital charges, and in-hospital deaths among infants with selected birth defects: United States, 2003. MMWR 2007;56(2):25-9.
  2. Ireys HT, Anderson GF, Shaffer TJ, Neff JM. Expenditures for care of children with chronic illnesses enrolled in the Washington State Medicaid program, fiscal year 1993 Pediatrics. 1997;100:197-204.
  3. Waitzman, NJ, Romano, PS, Grosse, SD (2004) The half-life of cost-of-illness estimates: the case of SB. Working Paper No: 2004–07. Department of Economics, University of Utah.
  4. Kinsman SL, Doehring MC. The cost of preventable conditions in adults with SB. Eur J Pediatr Surg 1996;6:17-20.
  5. Healthinsuranceinfo.net: Can a Group Health Plan Limit my Coverage for Pre-existing Health Conditions
  6. Census Bureau Finds the Number of Uninsured Grew to 46.3 Million in 2008 [Internet]. 2009 [last update 2009 Sep 10; cited 2013 Sep 5]. Available from: http://www.familiesusa.org/resources/newsroom/press-releases/2009-press-releases/census-bureau-finds-the.html.
  7. Are you really covered? Why 4 in 10 Americans can’t depend on their health insurance [Internet]. [Updated 2007 Sep; cited 2013 Sep 5]. Available from: http://web.archive.org/web/20080922163920/http:/www.consumerreports.org/cro/health-fitness/health-care/health-insurance-9-07/overview/0709_health_ov.htm.

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