These Questions & Answers originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.
I am 45 years old and have recently been diagnosed with Common Variable Immune Deficiency (CVID). Since I will be starting immunoglobulin (Ig) replacement therapy soon, can I anticipate having a normal life expectancy?
The life expectancy of someone with CVID can vary based on the general types of problems that are experienced. With the type characterized primarily by antibody deficiency, and who successfully treated by Ig replacement therapy before significant organ damage has had the chance to develop, life expectancy is very close to that of the “normal” population.
Seriously damaged lungs, however, as a result of recurrent infections, like pneumonia and chronic bronchitis, is not reversible. Ig replacement therapy may be successful in slowing progression of lung damage, but life expectancy will depend on just how badly the lung damage is in a particular individual.
A subset of individuals with CVID may experience other diseases including lymphoma or autoimmune disorders, such as inflammatory bowel disease, hemolytic anemia or low granulocytes and/or platelets, in addition to increased infections. Therefore, depending on the type and severity of these other conditions and one’s response to treatment, some individuals might live a few more years while others can experience a lifespan comparable to the antibody-deficiency form of CVID.
I have straight Medi-Cal (The California Medical Assistance Program) and am being told I have to move to a Medi-Cal managed care plan. The problem is that my immunologist does not take any of the managed care plans, and the plans do not have any immunologists that deal with primary immunodeficiency anywhere close to me. With my state hearing coming up soon, what advice can you give me?
We can certainly understand your concern over the potential to have to go to a health plan that does not have specialists and care you need.
When you have your state hearing, you can state that if you cannot stay on your current plan and are then forced to a managed care plan you will need a special authorization for out of network coverage. You can also state that the managed care plans do not have an adequate network of providers who can manage your rare, chronic disease. Also, argue the importance of continuity of care (COC), and that most insurance plans promote this, which is why you need to continue care with your current medical team.
If this is not feasible due to your state’s regulations, you can at least request COC until a successful transition is in place. Best of luck to you at the hearing!
These answers should not be used as a substitute for professional medical advice. In all cases, patients and caregivers should consult their healthcare providers. Each patient’s condition and treatment are unique.