Two New Drugs for PD: A Caregiver & Advocate Speaks Out

Myra HirschhornLast month, it was announced that two new drugs were approved by the US Food and Drug Administration, for treatment of Parkinson’s disease (PD). Both drugs, Rytary™ and Duopa™, are updates to carbidopa/levodopa. They offer, respectively, a newer formulation and delivery method to reduce off-times for those with PD. In this Q&A, PDF speaks with Myra Hirschhorn, one of our trained Research Advocates, to understand the community reaction to the approvals. As part of the Parkinson’s Advocates in Research program, Myra has been trained in the drug development process, and educates her community about research.

Q. Can you tell us why you are involved in the fight against Parkinson’s disease and how long you have been volunteering as a PDF Research Advocate?
Growing up, I saw my grandmother struggle with Parkinson’s disease, which was particularly challenging since she lived with PD in a time before carbidopa/levodopa was available. Now, my husband, who was diagnosed 16 years ago, lives with Parkinson’s. As his care partner, I have become involved in the community, learning as much as I can about the disease and sharing this information with others, through both local support groups and community events. Last year, I was accepted to attend the training for the Parkinson’s Disease Foundation (PDF) PAIR program, which was most informative. As a care partner and a PDF Research Advocate, I appreciate being kept up-to-date on research and am happy to share that information with my community to encourage empowerment, which leads to involvement in PD research and clinical trials.

Q. What are your feelings about the recent approvals of Rytary and Duopa for the treatment of Parkinson’s? How do you feel that the news might impact your family and the PD community?
Overall the news about both drugs is exciting. People I have spoken to in the PD community are elated that new medications are available and look forward to finding their benefits.

  • Many of us in the PD community waited years for Rytary, so it is very exciting to see this drug finally approved. Speaking from both a personal perspective, and for the larger PD community, my hope is that having this longer acting form of carbidopa/levodopa will provide individuals with PD, including my husband, with longer “on-time” and fewer dyskinesias. All this would make life much easier for many!! However, I am disappointed that Rytary might not available immediately (it seems it might not be available until April). After waiting so long to hear that it was approved, I am eager to see it become available as quickly as possible for the people with PD who might benefit from taking it. One issue I would like to know more about in regards to Rytary is how people with PD will transition to the drug — whether people will need to be weaned from their other forms of Sinemet before switching over to Rytary, or if they are able to transition directly to the new drug. I wonder how long it takes to see its positive effects. And on the other side of the coin, are there many side effects that may occur? If so how long do they last on the average? Will the medication provide any troubling side effects that might deter people from using it?
  • Regarding Duopa, I am pleased that it has also been approved. It was expected that it might not be approved until April, so it is exciting that the news came early. Because this drug involves surgery and a medical device, my questions include: How will people be fitted with the device? How will it work? How heavy is it? I understand that in Europe, where it has been available for many years, people with PD stay at the hospital while their doctors determine the correct dosages of the drug. How will the process be in the US? Again, I would be interested in hearing of any side effects and if they are long lasting? Needless to say, the PD community will need a lot of education on the system and its benefits, which I hope the manufacturer will provide.

Q. As a PDF Research Advocate can you talk about these two drugs in relation to the “PD pipeline” and drug development process for Parkinson’s disease?
Overall, it is hopeful news that has been long awaited to meet the needs of the Parkinson’s community. Previous to these approvals, the most recent drug approved for PD was droxidopa (Northera™), which was approved in 2014 to deal with orthostatic hypertension, so often an issue to those in the Parkinson’s community. Before that, in 2012, the Neupro® patch was reintroduced the US for treatment of PD. Otherwise, Rytary and Duopa are the first new medications to become available since rasagiline (Azilect®) and rivastigmine tartrate (Exelon®) were approved in 2006!

This shows that the path for gaining approvals of drugs for PD — from the scientists’ labs, to clinical trials, to the day when real drugs are available to people with PD — is such a lengthy process. It can take up to 15 years to get a drug through the pipeline. Even then, it isn’t always ready for final approval. For example, with Rytary, it made it through the pipeline, but  was held up for years because of manufacturing issues. It seemed like a long wait. Similarly, Duopa was in the pipeline for a while, and was approved years earlier in Europe and Canada.

Though some of this is due to difficulty with manufacturing, it also emphasizes to me how very important it is for folks to take part in trials to help move the research at a quicker pace. Today, according to the Center for Information and Study on Clinical Research, about 90 percent of clinical trials face delays, in part because of low enrollment. This is defeating us!

It is so important that more people take the time and effort to assist us in moving towards better treatments and a cure in the future. We must share information with others to have more people on board. When we do this, we will be helping ourselves as well as others. Everyone can take part in trials — people with PD are needed and those without PD are needed as controls. No amount of funding or other resources can ever make up for a lack of volunteers. Let’s all help! Let’s find the answers!

Q. We know that you are working to share this news in your community. Why is it important to do so and what are reactions from others in your community?
I put out the information immediately to my networks and support groups in the Parkinson’s disease community, because it is hopeful news! It is important that everyone be aware of the advances to hopefully be motivated to work for change — better treatments and a cure! The more people that we have on board the better it will be!

Myra Hirschhorn of Willingboro, NJ, is care partner to her husband who lives with Parkinson’s disease. She is also a facilitator of local PD support groups. In 2014, she underwent training to join PDF’s network of 230 Research Advocates. In her role as a PDF Research Advocate, she is passionate about educating others about PD research and opportunities to get involved in clinical trials. Professionally, Myra, was a special education teacher with a major in deaf education.

2 thoughts on “Two New Drugs for PD: A Caregiver & Advocate Speaks Out

  1. Karla golden

    Anxious to see if express scripts will carry the Retary on it’s formulary and will it be available dependents of retired vet’s and their dependents. I’m also wondering if my PD Specialist will give me a trial after checking on the side effects.???

    Reply
  2. John Weber

    I suppose the prescription costs are going to be sky high until a good number of years go by and it will be available in generic form. I am on medicare and I had to quit taking some drugs for COPD as they were very expensive and a couple of other drugs I have to take I reached the doughnut hole for prescriptions in 5 months last year which was my first year on medicare. Once you reach that doughnut hole the co pay really increases drastically and lots of us just have to quit taking certain medications because of the co pay price. It all sounds very good and everything but I know I wont be able to afford it and will probably be dead before these can go generic.

    Reply

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