When most people consider therapies, they often think of prescriptions and side effects. However, animal companion therapy is proving to be an effective means of improving well-being among patients. Many of the benefits of animal companion therapy can extend to patients and family members living with Huntington’s disease. This article highlights the physical effects caused by companion animals, as well as opportunities for taking advantage of this type of therapy.
The Physical Effect of Companion Animals^
Stress can have harmful effects on the body’s ability to cope with various health issues. Research consistently shows that exercise and meditation can help manage stress levels. More recently, the scientific community has begun to collect growing evidence that animal companions might have the same effect on the health of patients.
The presence of an animal alone can affect our emotions. Animals are often able to focus people’s attention in a way that is calming or de-arousing (Cirulli et al., p. 342). Since animals, especially dogs, respond with affection and generally pro-social behaviors, they can potentially serve as an “emotional bridge” within therapeutic contexts.
The physical health effects of a companion pet can range from everyday benefits to life-saving changes. Within the first few months of acquiring a pet, patients tend to have lowered risk for cardiovascular disease, increased chances of surviving myocardial infarctions, decreased need of physician services during stressful life events and a reduction in everyday minor health problems.
Many HD patients cite lack of familial support as a major problem. Companion animals could help mediate this gap as icebreakers, bridging people with the outside world and jumpstarting communication and social exchanges that can promote feelings of social integration. Research in nonhuman mammals suggests that oxytocin, a signaling molecule in the brain, helps to increase one’s feeling of reward during social interactions while also increasing bonding between individuals. Oxytocin also assists in responding to social stress for humans. In fact, interacting with a dog caused a significant increase in levels of oxytocin within the human, improving his or her ability to forge new social bonds.
Creating an animal companion relationship^
In the study, Animal-assisted Interventions as Innovative Tools for Mental Health, researchers state that dogs are the ideal animal companions. Over thousands of years of domestication, dogs have been “selected for characteristics that enhance their sensitivity to a wide range of human communicative signals, both visual and acoustic” (Cirulli, p. 341). Dogs develop complex communication systems with humans and are highly interactive. Additionally, dogs provide opportunities for physical, recreational, and social activities. They are easily trained to constructively work in different settings, which explain their use as Seeing Eye and rescue dogs.
HD patients who live in nursing homes are often under great duress, as institutionalization can result in a decreased quality of life and stress due to separation from loved ones. Dog-mediated interventions could improve communication and reduce loneliness and depression.
Furthermore, animal companions could also help children of families experiencing traumatic life occurrences. Animal companions have been shown to influence social, emotional, and cognitive development in children. Parents often report that an animal helps teach children about life events. Children who grow up with pets have an enhanced sense of empathy and responsibility, social status within the peer group, and higher self-esteem and self-confidence.
While the positive aspects of animal companionship seem numerous, there are studies that raise questions about the extent of this impact. Visiting dog programs do not consistently “improve mood, cognitive abilities or social interactions” (Cirulli, p. 344). This might indicate that perhaps longer-term, matched interaction is needed between animal and human to see any effects. In fact, saliva spits revealed that there is a time-dependent increase in behavioral results such as improvement in mood or social bonding, as measured by mood changes and cortisol levels. (Cortisol is a hormone often associated with stress. Long term interaction with animals has shown to decrease levels of this hormone, improving well-being.)
Adding Pets to the Home^
In summary, adopting a companion animal into a Huntington’s disease family or an institution housing HD patients might have marked effects on the well being of various participants. However, there are certain aspects to take into account when making the decision to add a family member to the home. To find more information about the logistics of adopting a pet, visit http://www.aspca.org/adopt/adoption-tips.
If you are concerned with integrating a pet into family experiencing health difficulties, please contact Pet Partners, an organization dedicated to “improving lives through positive human-animal interaction.” Visit their website at http://www.petpartners.org/.
For Further Reading:^
1. Cirulli, Francesca, Marta Borgi, Alessandra Berry, Nadia Francia, and Enrico Alleva. “Animal-assisted Interventions as Innovative Tools for Mental Health.” N.p., n.d. Web. 14 Oct. 2013.
2. Bekoff, Marc, Ph.D. “Pets Are Good for Us: Where Science and Common Sense Meet.”Psychology Today. N.p., 23 July 2010. Web. 14 Oct. 2013
3. Allen, Karen M., Jim Blascovich, Joe Tomaka, and Robert M. Kelsey. “Presence of Human Friends and Pet Dogs as Moderators of Autonomic Responses to Stress in Women.” Journal of Personality and Social Psychology 61.4 (1991): 582-89. Print.
4. Health Benefits of Animals. Pet Partners, n.d. Web. 14 Oct. 2013. .
The Huntington’s Disease Society of America hosted the “20th Anniversary of HD Gene Discovery: Lessons Learned” celebration symposium in the Hart Senate Building in Washington D.C. on Wednesday, April 3, 2013. HOPES was able to send a representative to the event. This is a summary of the representative’s experiences.
The Huntington’s Disease Society of America (HDSA) hosted an educational, free symposium to celebrate the discoveries and accomplishments made in the twenty years since Nancy Wexler and teams of “gene hunters” discovered the location of the gene that causes Huntington’s disease (HD) on chromosome 4 (More on the huntingtin gene here). A panel of speakers – all former members of the gene hunter teams – spoke about the past, present, and future of HD research.
Dr. Francis Collins, MD, PhD, Director of the National Institutes of Health (NIH)
The day started off with a presentation by Dr. Francis Collins, director of the National Institutes of Health (NIH). While at the University of Michigan, Dr. Collins was an instrumental member of one of the teams invested in finding the location of the HD gene.
Dr. Collins declared the month of April to be one of many celebrations. Sixty years ago, in 1953, the paper describing the structure of the double helix in DNA was published. Thirty years ago, in 1983, scientists successfully mapped chromosome 4. (Mapping means the scientists were successfully able to determine the location of the genes on that chromosome.)Twenty years ago, the location of the HD gene on chromosome 4 was discovered. Finally, only ten years ago, under the direction and leadership of Dr. Collins as director of the NIH, the human genome was finally sequenced.
The NIH is a part of the U.S. Department of Health and Human Services and is the “nation’s medical research agency making important discoveries that improve health and save lives” (NIH.gov). The NIH is the largest supporter of biomedical research in the world. Their goals for improving the lives of millions are ambitious, but necessary. Dr. Collins stated that the NIH is working on re-engineering the drug discovery pipeline while removing bottlenecks in the process. The National Health Service formed the National Center for Advancing Translational Sciences (NCATS) whose work is to advance projects that will remove bottlenecks in the drug discovery process, such as a chip that screens for the toxicity of certain drugs using induced pluripotent stem cells. The chip will assist in determining whether or not a drug will pass the blood-brain barrier prior to beginning clinical trials. The NIH is also a major funder of various areas of Huntington’s disease research, such as mitochondrial DNA maintenance, huntingtin protein biology, translational therapeutics, and Sirt 1/BDNF metabolism.
The BRAIN Initiative, recently announced by President Obama, will invest $100 million into mapping the systems of the brain beginning in fiscal year 2014. Essentially, mapping means scientists will have a better understanding of how and why the brain is connected. This will theoretically help researchers develop better treatments and cures based off of this information.
Tracing Our Roots: Nancy Wexler, PhD
Dr. Nancy Wexler is an iconic figure in the world of HD research. After watching her mother suffer from the disease, Nancy’s entire family invested their lives into the search for a cure. Nancy Wexler’s father met with Marjorie Guthrie, Woody Guthrie’s widow, and decided to create the Hereditary Disease Foundation. The mission of the Hereditary Disease Foundation, at the time, was to seek out and create collaborations amongst the world’s brightest scientists dedicated to curing HD. There were many complex challenges. At the time, it was believed that humans didn’t have biological markers, or indicators of a biological state that highlights certain genetic abnormalities, which would make it nearly impossible to discover what was causing genetic disease. However this did not stop the scientists.
Dr. Wexler first ventured to Venezuela in July of 1979. Venezuela contains one of the largest HD families in the entire world. Wexler and her team made the treacherous journey to Lake Maracaibo where they studied over 18,000 people. After collecting blood samples and family lineages, Dr. Wexler discovered that HD was first brought to this region by a woman in the 1800’s, potentially a slave or mistress of a European.
With a combination of the information collected from this Venezuelan family, as well as that of the American family that Dr. Collin’s lab studied, many new developments followed. The Venezuelan information led to the discovery that the CAG repeat length corresponds to age of onset of disease symptoms and indicated that environmental and other genetic factors can affect the age of onset. The combination of research findings led the scientists to chromosome 4, and more specifically, the mutation responsible for HD in 1993.
Dr. Wexler described not only her scientific efforts, but her humanitarian ones as well. The Venezuelan family members affected by HD were extremely poor. Many lived in huts and slept on dirt floors. There was no Western medical care whatsoever. When Dr. Wexler returned to the United States, the Hereditary Disease Foundation donated funds to create Casa Hogar, a home for families affected by the disease. Since 1979, the Hereditary Disease Foundation has donated over $17 million to bettering the quality of life of Venezuelans afflicted by this disease.
Dr. Nancy Wexler finished her talk by stating her belief that the cure lies in tackling the disease progression via the silencing of the mutant gene.
Current Affairs: James F. Gusella, PhD
Dr. Jim Gusella was another gene hunter who was instrumental in finding the location of the gene. He concentrated his talk on various HD basics. With the discovery of the HD mutation in 1993, scientists were able to determine the genetic difference between a normal person and HD person at any age. While we may take this achievement for granted twenty years later, at the time the development was a huge boost to understanding the underpinnings of HD. The “trigger of this entire process of genetics is now known.”
Huntington’s disease affects compounds that control the manifestation of the disease. Symptoms can be determined before genetic diagnosis as specialized doctors now have enough information to understand the cognitive, psychological, and physical features of the disease.
Dr. Gusella finished his talk with the same message as Dr. Wexler. He said that it is best to think of this disease as a process that must be stopped before any damage is done. Preventing disease progression before it starts is a guiding mission of his research group.
The Promise of the Future: Marcy MacDonald, PhD
The last gene hunter to speak was Dr. Marcy MacDonald. Dr. MacDonald began her talk with what was becoming the theme of the symposium: Interventions must be made during, but ultimately before, a life-long disease progression.
The “big goal” of researchers is to discover a way to cut or reduce the number of CAG repeats to a normal count (individuals with 35 repeats or higher will almost assuredly have symptoms of HD in a normal lifespan). Every human being needs the huntingtin protein to function, so reducing the total levels of the huntingtin protein is likely to be detrimental. We each have two copies of the HD gene (just like all of the other genes in our bodies). For most HD patients, one copy produces a version – or allele – of huntingtin that has a normal CAG length, while the other produces the mutant version of the protein with the expanded CAG region. It is crucial to control the mutant expression and not touch the normal huntingtin protein.
Dr. MacDonald advocates that scientific research needs to shift to discovering the earliest features of disease progression, as current methods primarily analyze only symptomatic individuals. Understanding how the earliest effects of the HD mutation differ or concur in various HD populations would allow scientists to make great strides in targeting the mutant protein expression.
HD is systemic. The brain is the most important organ affected, but many more types of cells throughout the body are impacted as well. This concept has been confirmed by a study of induced pluripotent stem cells (iPS) in HD patients. This study allowed scientists to use multiple lines of iPS cells (which function similar to embryonic stem cells) to re-create and study various cell types. Dr. MacDonald stressed the need to move away from research approaches aimed at a single target in the brain, as these methods have been ineffective and cost a large amount of money. Instead, it is important to discover various cell networks and functions affected in patients at the earliest age possible and research how environmental factors can affect disease progression.
Dr. MacDonald ended by discussing how HD is a “pioneering vanguard disease.” The research produced in the last 20 years has changed the way other neurological disease and therapeutic approaches are viewed by the scientific community. Emphasizing the need to find cures not just for HD, but all neurological illnesses, creates a collaborative paradigm that allows for a successful exchange of information and research.
Question & Answer
The day finished with a question and answer session in which attendees could inquire about certain points the scientists had made during their talk. Many of the people in the audience were personally affected by HD, whether they were caregivers, loved ones, or living with the disease. One of the overarching questions involved the fear that scientists are only realizing how much more complex this disease is, making it even harder to find the cure. Many of the attendees wondered if this meant discoveries were further down the road than previously thought. All of the scientists responded with the idea that “complexity is an opportunity” (Gusella). The more complexity, the “more possibility for solutions” (MacDonald). What was stressed to the audience, especially by Dr. Wexler, was the idea that the silencing of the mutant gene and early intervention along with potential therapies are the greatest opportunities we have for a cure.
This article describes current advocacy efforts, including the Huntington’s Disease Parity Act, Compassionate Allowance List, and how these two types of documents affect the average Huntington’s disease family.
Advocacy, by definition, is the means through which an individual or group attempts to influence public policy. The Huntington’s Disease Society of America website states that advocacy, pertaining to Huntington’s disease (HD), is sharing your personal HD story, as well as asking elected officials to support efforts to “improve access to treatment, medical care and to find a cure.”
Huntington’s Disease Parity Act
The Huntington’s Disease Parity Act would require the Social Security Administration to revise the disability criteria for those with HD, especially in terms of the language used to approve applicants for benefits. It would also waive the 24-month waiting period for Medicare eligibility for individuals disabled by HD. (To view the actual text of the bill, click here).
Many individuals experiencing symptoms due to HD are unemployed due to their disabilities. Because of this, they often rely on Social Security Disability Insurance (SSDI). SSDI is based upon the amount of income an individual was receiving when he/she became disabled. Payments often range from $500 to $2,000 a month. However, after qualifying for this insurance, the individuals must wait at least two years before receiving any benefits from the Medicare program. This policy is extremely problematic as many HD patients are under the age baseline for Medicare (65 years old), and yet deteriorate very quickly if symptoms aren’t addressed with proper medical care immediately after diagnosis.
The HD Parity Act would correct this problem by waiving the 24-month waiting period as it did for patients with amyotrophic lateral sclerosis (ALS) in 2000. (This bill passed as an attachment to an appropriations bill after confirming an influential number of co-sponsors in the House and Senate.) In addition, the SSDI guidelines for HD are almost 30 years out of date, affecting who is approved for the insurance. These guidelines do not recognize the psychological effects of HD, which can appear 10 to 15 years before motor symptoms begin. In the SSDI guidelines, HD is only defined as Huntingtons Chorea, the uncontrollable writhing movements that characterize the motor disability of HD. Correcting the medical definition would make HD patients eligible for SSDI earlier and alleviate a lot of financial hardship. According to estimates by Strategic Health Care, this bill would only cost $10-13 million a year, which is a negligible cost for Social Security Disability payments.
Efforts are being made to promote the bill and ensure that it is approved. The bill has been introduced four times previously, and is on its fifth introduction in 2015. The bill was introduced into the Senate by Senator Kirsten Gillibrand in April 2015, and currently has 1 cosponsor. In this 114th Congress, this year, it has been introduced into the House of Representatives by Representative Adam Kinzinger with 103 original cosponsors (the highest starting point yet). Additional representatives, both Democratic and Republican, have signed on as regular cosponsors, bringing the tally up to 129. This level of support is important, because it makes the bill a higher priority. Since it is starting out at a stronger place earlier in the congressional session, it is easier for legislators to find opportunities to attach it to a larger piece of legislation that is on its way to get passed. Since its inception, the Huntington’s Disease Society of America has been encouraging its support by senators and representatives and has set a goal of obtaining 175 co-sponsors. However, this goal is flexible as it is ideal to have a majority of Congress support this initiative. The more senators and representatives in support of this bill, the more likely it will be passed when voted upon.
To check whether or not your elected officials have supported this act, click here.
Compassionate Allowance List Update
SSA Announces Official Inclusion of Adult-Onset HD to Compassionate Allowance List
On Thursday, December 6, 2012, the Social Security Administration (SSA) announced that adult-onset HD would be added to the Compassionate Allowance List (CAL), along with Juvenile-Onset HD, which was added in April 2012.
The CAL allows those affected by diseases on the roster to enter a fast track for applying to Social Security benefits. This means families affected by HD will no longer face rejection and postponed benefits due to outdated definitions of HD symptoms. According to the Huntington’s Disease Society of America, the addition to the CAL “also recognizes the cognitive and psychological symptoms of HD and establishes criteria for their use in the qualification process.”
While inclusion on the CAL is a great step forward, there is still a need for the SSA to update their outdated description of HD, which defines the disease as a movement disorder (especially since the CAL language refers back to the SSA definition). CAL will not address issues of insurance. It also does not affect the language used by the SSA which does not include the cognitive and psychiatric aspects of HD, arguably the more debilitating aspects of the disease and the first to appear. These issues, along with the 2-year waiting period for Medicare eligibility, are addressed in the proposed Huntington’s Disease Parity Act, which is currently in need of more co-sponsors in both the House and Senate.
If you are interested in advocating for the HD Parity Act, visit http://www.hdsa.org/living-with-huntingtons/advocacy/ to write your senators and representatives, urging them to co-sponsor this important bill. Constituent involvement is important to elevate the importance that legislators place on the bill. Congress runs on stories from constituents; it is vital to put a narrative and a face behind the issue.
The Fast Facts: A Summary
The Parity Act Fact Sheet is a quick guide to the basic facts concerning the Huntington’s Disease Parity Act. All of these facts were compiled by the Huntington’s Disease Society of America.
1. Huntington’s disease is the only disease that is neurological, genetic, fatal disease, and rare, yet strikes during one’s working years. It is also the only disease to potentially have total cognitive, motor, and behavioral impairment, all at the same time.
2. The Compassionate Allowance Act eases the wait time for disability insurance review. However, only the Huntington’s Disease Parity Act will update the language, allowing more people with the disease to qualify for disability benefits. That means less people will be denied disability coverage.
3. The Social Security Administration (SSA) has the power to change their definition of HD. Their neurological disability guidelines expired on July 1, 2012. SSA extended their own deadline to publish the new guidelines for an additional two years. Legislation would mandate they speed up the process.
4. The HD Parity Act has an expected $260 million cost over 10 years (starting after the removal of the two-year waiting period). These estimates are based upon the costs incurred by a similar act passed for ALS (amyotrophic lateral sclerosis) in 2000. The cost of removing the two-year waiting period for all diseases is estimated to be around $113 billion over 10 years (2008 Congressional Budget Office).
5. If this legislation were passed, Medicaid savings could potentially lower the total cost of this policy by as much as 20 percent, for a total annual cost of $21 million annually (Strategic Health Care). (Strategic Health Care, a lobbyist group for the HDSA, obtained these numbers from the independent research conducted by Mathematica Policy Research and the Congressional Budget Office.)
6. The support of 218 representatives from the House and 60 senators from the Senate is needed in order to pass a bill. (The Senate number would mean there would be no possibility for a filibuster (an attempt to block a vote for legislation through methods such as speaking for extended periods of time). In addition, there do not need to be 60 official co-sponsors, but rather 60 Senators who have shown some level of support for the bill.)
7. Members of Congress do not need to sit on the committee of jurisdiction to co-sponsor legislation. Any member of Congress has the power to cosponsor a bill, no matter what committee they serve on.
8. Amyotrophic Lateral Sclerosis (ALS) and End Stage Renal Disease (ESRD) have both received waivers for the two-year Medicare waiting period through Congressional legislation.
Anyone can be an advocate for measures that would improve the lives of those affected by Huntington’s disease. Whether it be sending your representative an e-mail urging them to co-sponsor legislation or fighting discrimination in the workplace, everyone can make a difference.
1. “Bill Text 114th Congress (2015-2016)S.968.IS.” Bill Text of the Huntington’s Disease Parity Act. Kirsten Gillibrand, n.d. Web. 29 April. 2015.
This is the text of the bill introduced to Congress. View it in its entirety by clicking here.
2. “Advocacy.” Www.hdsa.org. N.p., n.d. Web. 11 Dec. 2012.
This is the Huntington’s Disease Society of America’s official Advocacy website.
3. “SSA Announces Official Inclusion of Adult-Onset HD to Compassionate Allowance List.” Message to Kristen A. Powers. 7 Dec. 2012. E-mail.
This is an e-mail sent out by the Huntington’s Disease Society of America. To view the web version, click here.
KP 02/15/2013 LV 04/29/2015
Saturday, November 10, 2012, marked the sixth annual Huntington’s Disease Clinical Research Symposium in Seattle, Washington. This event, organized by the Huntington Study Group, was open to the public and provided an opportunity for attendees to learn about the latest in clinical research and trials.
Below are several keynote summaries and their findings:
Ashwini Rao (Columbia University) on the Role of occupational and physical therapy in improving function in Huntington’s disease
Dr. Ashwini Rao of Columbia University began his presentation by outlining the definition of occupational therapy and physical therapy. Occupational therapists are professionals who aim to improve the health of clients in their daily activities through engagement in their occupation. Health care professionals who aim to promote movement, pain reduction, and health in their clients, on the other hand, conduct physical therapy. After overviewing the development of clinical guidelines for the therapies, Dr. Rao explained that there is an underutilization of physical therapy at all stages of Huntington’s disease (HD), particularly in the early stages.
There are several problem clusters that arise in HD patients: balance and gait, posture and balance, and hand control. The following cluster symptoms were determined from a study conducted by Dr. Rao’s lab that examined gait and balance performance. In the pre-manifest stage of HD, symptoms may be observable as slower speed, shorter stride, more variable steps, and diminished hand function. In the manifest stage, symptoms are apparent as decreased speed, shorter and more variable steps, decreased step frequency, variable timing, and difficulty with eating, writing, and household or work-related tasks. For more information on the study, please click here.
In addition to identifying problem clusters, Dr. Rao also introduced an intervention framework. He recommended that patients diagnosed with HD engage in fall prevention exercises, gait and balance training, and appropriate regular physical exercise, regardless of their stage of symptoms. Dr. Rao noted that a study published by the New England Journal of Medicine showed that 48 regular sessions of tai chi, as well as tango lessons, improved postural balance in patients with Parkinson’s disease. (For more information on this study, click here) This exercise regimen may translate to HD patients as well, with a larger number of sessions being more effective.
Dr. Rao recommended that all HD patients begin an interdisciplinary model of care, with therapy tailored to their specific stage of the disease. Dr. Rao believes that those who have been recently diagnosed and are in early stages should seek out a therapist as soon as possible. In his opinion, developing a relationship with this therapist would allow an early assessment of motor markers and the creation of an exercise program that includes strength, balance, and cardiovascular capacity components. It is extremely important to make exercising habitual, as well as involve family and close ones in a daily regimen.
As patients progress into middle disease stages, they should continue with their exercise programs, as well as transition to therapeutic exercises in order to discover markers that might indicate risks. A home assessment should be conducted to determine the need for shower chairs, safety bars, scatter rugs, and any other items that might make the home friendlier and safer. Patients should also consider assistive devices such as a walker. Dr. Rao stated, “similar to cars, four wheel drive is the best” as it improves speed, stride length, and reduces variability in motion. Footwear should contain a supportive light cushioned sole, as well as flexible upper foot and heel support.
In terms of postural control during eating, patients should consider a sturdy chair with a high back. They should also throw out all the traditional mealtime rules such as having one’s elbows on the table (a necessary strategy). It is important to remove distractions during mealtime as well.
As for financial concerns, Dr. Rao mentioned a New York Times article on the topic of a recent settlement clarifying Medicare will pay for services needed to maintain a patient’s current condition in order to prevent or slow deterioration. This includes the necessary therapies outlined in Dr. Rao’s talk.
To learn more about Dr. Rao’s research, click here.
Dr. Steve Hersch (Mass General Hospital) on the Secondary Prevention of Huntington’s disease
Dr. Steve Hersch of Massachusetts General Hospital described the necessity of devising clinical trial designs that include at-risk individuals that do not want to undergo genetic testing. By allowing at-risk individuals to participate without learning their CAG count, researchers can enable greater participation while preventing coercion of unwanted genetic testing. Candidates would be anonymously tested for pre-manifest HD via cognitive and blood markers, as well as neuroimaging. (For more information on neuroimaging, click here.)
Dr. Hersch then transitioned into describing the research his lab has been conducting on the safety, tolerability, and potential efficacy signals for high-dose creatine to treat HD. (For more on creatine, click here). Creatine increases brain energy and has shown to be safe and tolerable. Creatine additionally slows brain atrophy and is actually modifying the effects of HD in patients that are pre-symptomatic. However, it is not yet clear if it can delay the onset of symptoms.
In addition, Dr. Hersch stressed that the creatine used in these studies is medical grade and not the creatine often found in health stores. One should not test high doses of creatine unless done so under medical supervision. As for clinical trials, Phase III of the CREST-E study will be a more rigorous study of the efficacy of creatine. Recruitment for the trial is ongoing. (For more on the CREST-E study, click here)
Dr. Blair Leavitt (University of British Columbia) on the Changing demographics at its prevalence on HD
Dr. Blair Leavitt of the Centre for Molecular Medicine and Therapeutics (University of British Columbia) began his presentation by describing the prevalence of HD: 5 in 100,000 globally have the disease. In British Columbia, the location of his research, HD affects at least 1 in 1000. However, there has recently been a rise in the prevalence of the disease. Dr. Leavitt mentioned that new mutations have been occurring in families where HD had previously been absent.
As life expectancy increases in the United States, Dr. Leavitt believes that HD will soon become a disease of older people as life expectancy increases, similar to how Alzheimer’s is known today. Currently, many people might have HD, but will not live long enough to express symptoms. However, as technology and medicine improves, more individuals are expected to live long enough to the point where they are symptomatic.
Lavonne Goodman M.D. on Clinical Trials: Why Isn’t Everyone Doing It?
Dr. Lavonne Goodman, HD patient advocate, cited informal surveys conducted recently aimed at understanding why more people aren’t participating in clinical trials (For more on clinical trials, click here). Their findings suggested that a lack of awareness has prevented many people from participating. Often, there is a desire to participate, but many of those affected by HD are not aware of when or where trials are happening, and why these clinical trials are being conducted. Participation rates in clinical trials increased locally when trial advocates visited HD support groups and informed the group of local trials. In addition, advocates provided information packets about these trials, and addressed members’ questions and concerns. Many of the members of these support groups asked the following questions: What studies and trials are currently ongoing? What is available in my geographic area? Are any open for enrollment? Why are these studies being done? What is the enrollment process?
Many other barriers must be overcome to increase HD clinical trial participation. These barriers include a fear of drug risks and side effects and stress. The stress of dealing with HD is often hard enough; adding a clinical trial to one’s to-do list can seem too overwhelming. The logistics are also difficult, as one must consider time lost at work, travel expenses, and potential loss of income. And again, lack of knowledge can be a deterrent as people might not want to participate if they think they are getting the placebo, or have to stop taking drugs that currently work for them. In addition, people are afraid that confidentiality will be breached and discrimination will ensue from medical providers or insurance.
Currently, hdtrials.org and clinicaltrials.gov are two resources where individuals can learn about trials occurring in their areas. However, these two websites are not always up-to-date. The Huntington’s Disease Society of America is working on improving information about clinical trials on their website in the next few months.