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Topic Suggestion Description

View Topic Suggestion Disposition (PDF) 52 kB

Date submitted: August 15, 2011

Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.
For patients with common variable immune deficiency receiving intravenous immunoglobulin therapy (IVIG), what is the difference in long term outcomes for those who receive treatment in their homes vs. hospital or clinic?
Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)
yes
If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:
home-based vs. hospital or clinic setting for treatment
What patients or group(s) of patients does your question apply to? (Please include specific details such as age range, gender, coexisting diagnoses, and indications for therapy.)
common variable immune deficiency (CVID) is diagnosed across the age span, beginning as early as elementary ages, but more commonly diagnosed in adults. IVIG therapy is prescribed based on specific lab test results.
Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)
Current Medicaid restrictions require patients with CVID to receive IVIG therapy in hospital clinic settings, while private insurance covers it in the home.
Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)
If benefits can be scientifically identified for homebased IVIG treatment, it might help make the treatment available to medicaid recipients in their homes, thus eliminating transportation costs and hopefully improving compliance with treatment protocol and schedule.
Describe any health-related risks, side effects, or harms that you are concerned about.
I am concerned that my 25 year old son, and others with immune deficiencies, will be forced to receive this life-saving treatment in a setting where they may be exposed to people with other illnesses for which they may be susceptible. My son is on our insurance currently, but at 26, medicaid may be his only option.

Appropriateness for EHC Program

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?
yes
Which priority area(s) and population(s) does this topic apply to? (check all that apply)
EHC Priority Conditions (updated in 2008)
  • Arthritis and nontraumatic joint disorders
  • Infectious diseases, including HIV/AIDS
AHRQ Priority Populations
  • Low income groups
  • Minority groups
  • Women
  • Children
  • Elderly
  • Individuals with special health care needs, including individuals with disabilities or who need chronic care or end-of-life health care
Federal Health Care Program
  • Medicaid
  • Medicare
  • State Children's Health Insurance Program (SCHIP)

Importance

Describe why this topic is important.
What specifically motivated you to ask this question? (For example, you are developing a clinical guideline, working with a policy with large uncertainty about the appropriate approach, costly intervention, new research you have read, items in the media you may have seen, a clinical practice dilemma you know of, etc.)
I am concerned that my 25 year old son, and others with immune deficiencies, will be forced to receive this life-saving treatment in a setting where they may be exposed to people with other illnesses for which they may be susceptible. My son is on our insurance currently, receiving IVIG at home every month, but at 26, medicaid may be his only option. Currently, he might have to go to the nearest hospital where the treatment could be provided, about an hour away.
Does your question represent uncertainty for clinicians and/or policy-makers? (For example, variations in clinical care, controversy in what constitutes appropriate clinical care, or a policy decision.)
yes
If yes, please explain:
Clinical practice guidelines exist to show that IVIG can be safely administered in the home by a trained infusion nurse. Private insurance covers it at home--medicaid doesn't.

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?
Advocates will have additional research to back requests for legislation to make IVIG available in homes of medicaid patients.
Describe the timeframe in which an answer to your question is needed.
Legislation has been introduced for the past couple of years--maybe more--without success. Currently there is a Medicare Patient IV Access bill in both the House and Senate. http://primaryimmune.org/idf-advocacy-center/ivig-reimbursement
Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.
People most vulnerable to infection are being required to go to the hospital to receive treatment to enable them to fight infection, at the same time being exposed to people with a variety of infectious illnesses.

People with the fewest resources are being forced to bear transportation costs and sometimes take off work in order to receive a life saving treatment in a clinic setting that can be provided safely in their homes.

Nominator Information

Other Information About You: (optional)
Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)
  • Patient/Consumer
Are you making a suggestion as an individual or on behalf of an organization?
Individual
Please tell us how you heard about the Effective Health Care Program
Internet search