Huntington’s Disease (HD) is an extremely multifaceted disease, and receiving treatment and care for HD can come in many different forms. Those who receive an HD diagnosis are often overwhelmed by their treatment options, and specifically, the costs associated with each option. This article attempts to provide an overview of the major cost drivers implicant of HD, as well as their frequency of use and individual costs.
As mentioned above, an HD diagnosis can leave an individual with many questions, especially regarding their treatment options and expenses. To better analyze this topic, it is useful to build our discussion of HD costs upon the general progression of HD. Medical terminology would typically divides HD into 5 stages of progressing severity; however, for the sake of clarity, we will divide HD into three distinct progression stages.
Our first stage–the early stage–of HD begins directly after diagnosis. This stage is the least expensive of the three in an HD patient’s progression. Here, the most important cost drivers include screening tests and medication. As motor and cognitive symptoms increase, HD moves into the middle stage. Currently, there exists no cure for HD, and all treatments available today are therapeutic in nature. These therapies can compromise the majority of a patient’s expense in the middle stages of HD progression. Finally, in the late stages of HD, symptoms may prevent an individual from living alone or caring for themselves. The majority of costs in the late stage, then, are long-term care, home assistance, and/or nursing home fees.
When discussing the early stages of HD and its costs, the first noteworthy expense is genetic screening tests. These are used to determine if someone has a genetic predisposition for HD, as well as if they have the DAG repeats of the huntingtin protein that are an indicator of HD. These tests can range anywhere from 100-2000 US dollars. A more precise and scrutinizing test usually incurs a greater cost.
The second most common cost for an individual in the early stage of HD is medication. Many patients who are diagnosed with HD are encouraged to take medication that improves symptoms, or slows the progression of symptoms. With a prescription, many of these medications (such as Xenazine, for HD chorea) are largely covered by insurance. Copays are likely around 25 US dollars. Without insurance or a prescription, however, prices for a medication such as Xenazine can range anywhere from 400 to 4000 US dollars for 30 tablets. It is important to discuss with your insurance the provided coverage for any medication prior to use.
In the middle stages of HD, therapy costs can become more of an expense as managing symptoms becomes integral to treatment. Various different forms of therapy for HD exist, but the three most prevalent forms are physical therapy, speech therapy, and occupational therapy.
Physical therapy (PT) is the most common therapy utilized by HD patients. PT usage varies greatly patient to patient, but it incurs a cost regardless of frequency. Typical ranges for a single PT appointment range from 75-150 US dollars, with this dropping to 25-50 US dollars if covered by insurance. As HD progresses, symptoms may become more severe, and the need for PT or a similar therapy may increase–this is important to keep in mind when analyzing the incumbent cost on an HD patient.
Speech therapy is another common form of treatment for individuals with HD. It is very similar to PT in that while insurance greatly reduces the cost to the patient, it is never fully covered. The national average cost of a speech therapy appointment is 218 US dollars.
Finally, occupational therapy (OT) is the last, most common form of therapy among HD individuals. OT helps HD patients to complete everyday tasks and have more autonomy throughout their daily life. OT usually incurs an initial visit fee of ~200 US dollars, with subsequent visits ranging from 40-200 US dollars. OT, like PT and speech therapy, can be partially covered by insurance, depending on the type of plan.
When an individual reaches the late stage of an HD diagnosis, they are likely unable to continue living alone due to their symptoms. Thus, the major cost associated with a late stage HD patient is the usage of long-term care (LTC) facilities, or home assistance. The average cost of a nursing home is 198 US dollars per day, while a home aide is 21 US dollars per day. These figures are also in 2011 dollars, so likely, the cost is greater today. Prices can also vary by locale, so keep this in mind when exploring LTC options.
The above figures are obviously very expensive, and as a result, LTC insurance is important in affording these options. The first notable part of LTC insurance is that Medicare does NOT cover LTC. LTC insurance plans must be purchased separately. These plans typically cost around 2,200 US dollars per year and can help cover both nursing home and home aide costs, depending on the specifics of the plan. For more information on LTC and insurance see here (link to Maria’s insurance article).
This article is not meant to provide any diagnoses on treatment, or assume that all HD cases progress through the same stages at the same rate. HD varies greatly from patient to patient, and each case will carry with it its own needs and treatment. Additionally, the costs outlined above are estimates. Actual expenses will likely vary by region and by insurance plan. The figures above are meant to offer clarity into what costs are associated with an HD diagnosis, but not define it.