The Public Policy About Parkinsons

Health Issues for the Aging
One of the diseases that creates a burden on our health care system, especially among the aged, is Parkinson's disease. At present, there is no known cure for Parkinson's, merely treatments that can help to reduce the symptoms. This makes it difficult to develop a public health solution to Parkinson's. On the prevention side, one of the challenges is that while there have been some risk factors potentially identified, the reality is that there is no known cause either. For example, a meta-analysis suggest that living in a rural area, drinking well water, farming and exposure to pesticides all might be risk factors (Priyardashi et al, 2001). The current state of research at present is such that the different forms that Parkinson's takes are being studied (Peto, et al, 1995). Moreover, the different ways that Parkinson's presents can also bring about a number of different complications, from which the need for treatment arises. One example is that PD patients suffer from gastrointestinal issues at a higher rate than the general population – the link is known but the mechanisms by which this link occurs are not (Natale et al, 2008).
There have actually been a number of studies that show promise in getting to a cure for Parkinson's. One study showed that alpha-synuclein synaptic pathology might help in providing direction for a cure (Bellucci et al, 2012). Disruption of the brain-blood barrier may be a causal factor, and thus a pathway to a cure (Lee & Pienaar, 2014). A substantial body of research shows that cannabinoids are effective in treatment of Parkinson's symptoms, owing to the neuroprotective properties of cannabinoids (Carroll, Zeissler, Hanemann & Zajicek, 2012). Several studies of self-reporting Parkinson's patients support this, showing that many take cannabis to medicate, and that nearly half find this to be effective (Venderova et al, 2004).
Because so little is known about Parkinson's, most of the public policy response has been aimed at ensuring funding is available to researchers. The primary body for disbursing this funding is the National Institute of Neurological Disorders and Stroke (NINDS), which in 2016 disbursed $107 million to various agencies that conduct Parkinson's research (NINDS, 2017). In total, NIH spent $161 million on Parkinson's research in 2016. Decreasing the burden of this disease is actually one of the mandates that NINDS has, so there is a clear understanding of the need to invest in Parkinson's research, because of the burden in presents on society and on the government.
The biggest issue where government policy is concerned is in managing the cost of Parkinson's treatment. There are a variety of treatments, ranging substantially in price. The most current treatment, Gocovri, has recently been approved, at a cost of $28,000 per year (Investors.com, 2017). In 2007, the direct medical cost of PD was $6.22 billion and overall economic impact was $10.78 billion. Of this, medications are $1.47 billion of direct costs (Valldeoriola, 2010). Other costs include nursing homes ($2.6 billion), caregivers ($2.36 billion), lost productivity ($1 billion). At that time, direct cost per patient was $12, 491 (Valldeoriola, 2010), much less than would be the case today with a patient on Gocovri.
Much of the direct costs come from Medicare, but some of the indirect costs will as well, and more will come from Veteran's Affairs. So there is significant financial incentive for the US to explore all options with respect to managing these costs. Yet, cannabis is still illegal at the federal level. There are several states where it is legal for medical purposes, yet the stated policy of the White House is to increase marijuana law enforcement (Liptak, 2017), which could reduce access to cannabinoids for PD sufferers, increase their costs or risks, and could curtail their rights to care even in states with medical marijuana laws.
The federal government's lack of willingness to explore all options for treating PD sufferers is baffling – the same government is willing to allow legal opioid production but not legal cannabinoids. It would seem that there is an opportunity to allow PD sufferers to avail themselves of medical marijuana, and that this might reduce the effects of their disease, and in turn reduce the cost burden to the American taxpayer.
The barrier here seems to be longstanding drug policy, and the view among many prominent groups that cannabinoids are some sort of "illegal drug", rather than a plant from which useful medical compounds can be extracted. While this prohibition has not been a problem for opioids, there seems to be a special treatment set aside from cannabis, and that is unfortunate.
With respect to other areas, there do not appear to be significant barriers. For example, it does not appear that there is a barrier to funding research at the present time, that research continues to be conducted and funding continues to be made available for NINDS to disburse to researchers. It might be argued that there is more room to give on funding, but that is actually not something indicated in the research. That the spending level is much lower than the annual cost to the government to treat PD is noted, but that does not necessarily indicate that throwing additional money at the problem would bring us any closer to a cure.
Private funding of PD drugs continues. Gocovri is made by Adamas, a pharmaceutical company, which indicates that there is some degree of private investment being made into drugs that can treat Parkinson's. The current patent system allows for pharmaceutical companies to develop drugs, have a monopoly, and then become price-setters. This presents a challenge for government, wherein it then will end up paying for a lot of the Gocovri that is prescribed. The government creates a system where it is the major payer for a lot of drugs, but has also granted monopoly rights to the companies that produce the drugs, in order to encourage drug development.
My own recommendation is first to increase the level of funding made available to agencies. There should not be any want of funding – the main constraint should be the number of people researching Parkinson's, but with surplus funding, that would encourage more medical researchers to get into the field. The ROI on such funding would be tremendous if a cure is found – current rates of investment in research seem healthy but are minimal relative to the amount of money the US spends on Parkinson's treatment each year. If some of this research could lead either to a cure or even just to understanding better how to prevent Parkinson's, that could potentially help. While it is possible that one cannot simply throw more money at the problem, the more money that is available, the more researchers will be drawn to looking at PD. Moreover, there is equally no evidence that making more money available will fail to work.
Ending the war on cannabis would also help a lot of patients get access to help that comes at a low cost. This form of treatment is often done via self-medication, but if legalized could be done in a more controlled manner, where people could get the right dosage that they need to medicate. Ultimately, this is one of the biggest barriers to lowering the cost of care for PD patients – instead of people having to buy marijuana on the black market, they could receive a legal, medical dosage, and have their symptoms managed more effectively. This barrier seems needless from a medical standpoint and inconsistent with the law's view on opioids, which are a much greater health threat.
All told, the federal response to Parkinson's is not bad, but there is definitely room for improvement. As long as funding is held to the level that researchers request, so that there are no constraints on their work, and that there is an effective parallel private research stream, the only thing that really remains is to give all Americans equal access to safe cannabinoids to use in their treatment of PD symptoms.




References

Belluci, A., Navarria, L., Zaltieri, M., Missale, C. & Spano, P. (2012). Alpha-synuclein synaptic pathology and its implications in the development of novel therapeutic approaches to cure Parkinson's disease. Brain Research. Vol. 1432 (2012) 95-113.

Carroll, C., Zeissler, M., Hanneman, C. & Zajicek, P. (2012). ?9-tetrahydrocannabinol (?9-THC) exerts a direct neuroprotective effect in a human cell culture model of Parkinson's disease. Neuropathy and Applied Neurobiology. Vol. 38 (2012) 535-547.

Investors.com (2017). Adamas Parkinson's drug is double the cost of analyst expectations. Investors' Business Daily Retrieved November 20, 2017 from https://www.investors.com/news/technology/adamas-parkinsons-drug-cost-is-double-analyst-expectations/

Lee, H. & Pienaar, I. (2014) Disruption of the blood-brain barrier in Parkinson's disease: Curse or a route to a cure? Frontiers in Bioscience. Vol. 19 (2014) 272-280.

Liptak, K. (2017). White House: Feds will step up marijuana law enforcement. CNN. Retrieved November 20, 2017 from http://www.cnn.com/2017/02/23/politics/white-house-marijuana-donald-trump-pot/index.html

Natale, G., Pasquali, L, Ruggieri, S., Paparelli, A. & Fornai, F. (2008). Parkinson's disease and the gut: A well-known clinical association in need of an effective cure and explanation. Neurogastroenterology and Motility. Vol. 20 (2008) 741-749.

NINDS (2017). Focus on Parkinson's disease research. NINDS.NIH.gov. Retrieved November 20, 2017 from https://www.ninds.nih.gov/Current-Research/Focus-Research/Focus-Parkinsons-Disease

Peto, V., Jenkinson, C., Fitzpatrick, R. & Greenhall, R. (1995) The development and validation of a short measure of functioning and well-being for individuals with Parkinson's disease. Quality of Life Research. Vol. 4 (3) 241-248.

Priyardashi, A., Khuder, S., Schaub, E. & Priyardashi, S. (2001) Environmental risk factors and Parkinson's disease: A meta-analysis. Environmental Research Section. Vol. 86 (2001) 122-127.

Valldeoriola, F. (2010). Cost and efficacy of therapies for advanced Parkinson's disease. Towards New Therapies for Parkinson's Disease.

Venderova, K., Ruzicka, E., Vohseck, V., Visnovsky, P. (2004) Survey on cannabis use in Parkinson's disease: Subjective improvement of motor symptoms. Movement Disorders. Vol. 19 (9) 1102-1106.