More on Medical Costs: The Cost of Hemophilia
Hemophilia is a rare genetic disease. It cannot be cured or prevented by diet, exercise, counseling, or wellness programs. About 400 babies are born with it each year and CDC estimates that there are 20,000 people in the US who have it. Individuals with hemophilia have defective blood clotting mechanisms and are at risk for internal bleeding which causes pain and swelling. If uncontrolled, it can lead to permanent joint damage, chronic pain, anemia, infections, and fatal hemorrhage.
In the commercially insured population in the United States, Hemophilia A and B affect about 13 men 100,000 men. The prevalence for men with Medicaid coverage is higher.
A Milliman report provides the means and 90th percentile costs for commercially insured hemophiliacs from 2008-2011. Unlike high cost cancer or trauma patients, hemophiliacs are likely to have very high costs over many years, costs that are high enough to wipe out the profits of insurers or Medicaid plans without adequate stop loss insurance or capital reserves. Note that the average annual cost per person in the commercial population as a whole is $4,199, and that only 10 percent of people have annual costs over $8,404.
The average costs for hemophiliacs in 4 state Medicaid programs were significantly higher, even though they were calculated for earlier years. It is possible that many of those with more severe disease cannot work and so qualified for Medicaid. The lower average cost for Medicaid as a whole may be due to the large number of children enrolled in most state Medicaid programs.
If people with more severe disease are more likely to be covered with Medicaid, one would expect to see more beneficiaries with higher costs, and the data show that Medicaid patients do spend at least 60 percent more on hemophilia drugs than people in the commercially insured population. The average annual cost to treat a Type A hemophilic on Medicaid was $121,335.
Surprisingly, the distribution of spending in the commercial and Medicaid populations is quite dissimilar. Almost 30 percent of Medicaid hemophiliacs spend less than $400 a year. The proportion of people in the commercial population in that spending category is miniscule.
Almost 30 percent of Medicaid hemophiliacs spend less than $400 a year. The proportion of people in the commercial population in that spending category is miniscule.
I wonder if that is due to lack of access to care? Or lack of adherence to therapy?
Third and fourth possibilities are misdiagnosis and fraud.
Interesting article- I have the question as Devon, and I also question why there is a disproportionately higher number of male hemophiliacs on Medicaid.
I wonder how much of the cost is associated with HIV infection acquired before adequate blood screening was available. If there are any survivors from that era, that is.