Key messaging and talking points

There is a great need for early interventional treatments for PKD when they can have the greatest impact.

• There is a critical need for treatments for PKD to slow down the formation of cysts, minimize kidney enlargement and maintain healthy, functioning kidneys for as long as possible.
• Early intervention is critical in having a long-term impact on people’s health. Much like early diagnosis and treatment for hepatitis, tolvaptan is a treatment to be used when it can have the greatest impact, not after the organ is no longer functioning.
• Treating the disease after it has progressed and the patient is near end-stage renal failure is too late to have much of an impact as significant and irreversible damage will have been done.

PKD is an expensive disease that impacts the economy and the ability for people to be productive members of society.

• PKD is an expensive disease in many ways, and the economic impact to those with PKD, and the nation as a whole, is great.
• It is a painful disease which often results in visits to the emergency room for pain relief, and other adverse PKD-related issues. Treatment in the emergency room is the most expensive type of medical care.
• Those without health insurance, or inability to pay medical bills, must rely on government support, which results in a burden on society as a whole.
• There is a direct negative impact to the workforce. People with PKD want to be contributing members of society by performing productive jobs, which allows them to pay taxes, and maintain health insurance.
• Intolerable pain often leads to missed work days, decreased worker productivity, and inability for people to keep their jobs.
• Most often the disease progresses to the need for dialysis. While on dialysis people must miss days and weeks of work, and often go on disability. It is difficult to be high-functioning while on dialysis.
• Those who have had transplants must take numerous, expensive immunosuppressive medications that many can’t afford on their own.
• Those who can’t afford health insurance can’t afford the drugs, and Medicare (for people under the age of 65) only covers these medications for the first 36 months post-transplant.That can lead ultimately to the loss of the kidney, which results in people going back on dialysis and/or requiring another transplant. When previously transplanted patients need another kidney, they return to the transplant list which reduces the number of organs available to other waiting recipients.
• Medicare spends an average of $77,500 per year for an individual who is on dialysis, and a kidney transplant costs on average $110,000.

People with PKD are highly compliant as they have no other options for treatment to slow down the disease.

• Currently, the only PKD treatments are for symptom management, which doesn’t impact the final outcome of kidney failure. These symptoms include pain, hypertension, bloody urine, kidney stones, frequent urinary tract infections and large abdomens.
• People with PKD often say they would accept some side effects for better kidney function and decreased cyst development.
• They cite that large abdomens, with our without chronic, intense pain, are nearly unbearable to live with. They would accept any relief, even if that comes with added responsibilities such as regular testing and monitoring, and side effects such as frequent urination and thirst.

It is imperative that treatments for PKD to delay disease progression are found.

• Dialysis,transplantation and homeopathic treatments should not be the only options for people with this devastating disease.
• Increased water intake can probably help; however, experience with kidney stone disease shows that prescribed water drinking of sufficient amounts cannot be consistently maintained.
• Homeopathic treatments such as drinking water, reducing protein or other dietary approaches, will not impact the final outcome of kidney failure, and cannot fully address all the symptoms that PKD presents.

Message to advocates

As we have seen through recent activity, the voices of PKD patients are being heard. At the Foundation, we have seen an increase in interest from our supporters about how to advocate for treatments to delay the progression of PKD and lessen the impact of symptoms. More than ever, it is time for individuals to share their voices to have an impact on decision-makers (including health organizations and legislators).

Dialysis, transplantation, and homeopathic living should not be the only options for people with PKD. We want to help you advocate so you can personally make a difference. Because of this, we have built a toolkit with materials and information you can use.

Please get involved and advocate for PKD treatments by doing the following:

• Email, tweet, mail, reach out to influencers and your local representatives.
• Mobilize your friends and families to do the same.