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The 21st Century Cures Initiative…And a Bold Plan

David Sheon

David Sheon

The one thing that Democrats and Republicans in the House of Representatives agree on is that they just don’t agree. It’s an old, tired state of affairs and the resulting gridlock affects everything from education to crime to defense. Thanks to two typical party rivals, this unfortunate paradigm may be shifting…all in the name of health and science.

Fred Upton (R-Michigan) and Diane DeGette (D-Colorado) have set aside their differences and joined together to lead the 21st Century Cures Initiative. The initiative marks the first time in memory that Congress is taking a comprehensive look at what steps can be taken to accelerate the pace of cures in America. With the backing of the Energy & Commerce Committee (which Rep. Upton chairs), The House of Representatives is looking at “the full arc of this process – from the discovery of clues in basic science, to streamlining the drug and device development process, to unleashing the power of digital medicine and social media at the treatment delivery phase.”

In a recent bylined article in The Hill, a newspaper read by members of Congress and their staff, Jim Greenwood, President and CEO of the Biotechnology Industry Organization, offers an idea that could take hold in the spirit of this ember of bipartisanship. His idea includes potential funding for a massive, long-term research study that will involve over 100,000 Americans and examine some of the most devastating diseases, including Alzheimers. Part of the study will be to identify biomarkers common to those who develop the diseases, which will then lead to cures. Once a biomarker is identified, drugs can be developed that hit that biomarker.

Mr. Greenwood, once a member of Congress himself, addressed the Upton-DeGette initiative during the Rare Disease and Orphan Product Breakthrough Summit held by the National Organization for Rare Disorders that convened in Alexandria, Virginia earlier this week.

Mr. Greenwood pointed out that many scientists have failed to find cures to diseases like Alzheimer’s because by the time the patient shows symptoms, the neurological damage is already done. His long-term biomarker study is designed to overcome this hurdle. Greenwood challenged the conference attendees to help think through how this could work to develop cures for rare diseases as well.

The 21st Century Cures Initiative recognizes that innovation is happening at lightning speed. From the mapping of the human genome to the rise of personalized medicines that are linked to advances in molecular medicine, constant breakthroughs are changing the face of disease treatment, management, and cures. Health research is moving quickly, but the federal drug and device approval apparatus is not keeping pace. And when the laws don’t keep up with the innovation, we all lose.

Representatives Upton and DeGette recognize that for more lives to be saved, Congress will need to take a comprehensive look at the process of getting drugs to market – from discovery to development to delivery with the simple goal of saving lives. Add Mr. Greenwood’s idea into the mix, and we may be able to save billions of dollars that would otherwise go to the long-term treatment of Alzheimer’s patients. More importantly, we could save millions of patients and their families the painful loss caused by the disease.

This makes so much sense that not even Congress can disagree. Will you tell your member of Congress to support this bipartisan initiative?  What do you think of it?

Are You Ready to Show Your Purple to Stop Alzheimer’s?

Advocates nationwide are gearing up to participate in activities around Alzheimer’s Action Day on September 21, a pre-event to World Alzheimer’s Awareness Month in November. As the facts demonstrate, the need for education and action around this disease is great. A form of progressive dementia that adversely impacts memory, thinking and behavior, Alzheimer’s is the sixth leading cause of death in the United States and there is no cure.

Paul DeMiglio

Paul DeMiglio

To build support and increase visibility, the Alzheimer’s Association leverages Alzheimer’s Action Day to educate the public and fund research for Alzheimer’s, urging individuals to “Go Purple to End Alzheimer’s.” The association empowers supporters to raise money for Alzheimer’s research with the following creative ideas that can be used in the workplace, at school or at home:

  • Go purple at your office or campus by encouraging your co-workers or your peers to wear purple.
  • Decorate common areas at your workplace or school with purple. Share the latest stats and trends about the disease, like the 10 warning signs of Alzheimer’s. Call (800) 272-3900 to request fact sheets.
  • Go “Casual for the Cause” at work. Order $5 stickers from the association that you can then sell in your office to raise funds. Download a flier here and e-mail Kaarmin Ford at kaarmin.ford@alz.org for stickers.
  • Host a dinner party at your home and ask each attendee to donate what they would have spent going out. Click here to download meal ideas that can be used at home or in the cafeteria.
  • Invite your friends to Tailgate to Tackle Alzheimer’s starting this month. Supporters who host these purple-themed tailgates can ask participants to donate $5 to help the 5 million Americans living with Alzheimer’s.

Over the past decade, Alzheimer’s has become an even more urgent public health crisis, demanding greater attention from both a patient care and cost-savings standpoint:

  • Five million Americans and one in three seniors live with Alzheimer’s.
  • Since 2000, the number of deaths attributed to Alzheimer’s has increased by 68 percent.
  • The disease accounts for 50-80 percent of all dementia cases.
  • Alzheimer’s will cost the nation an estimated $203 billion this year.
  • Costs are expected to increase by 500 percent by the year 2050, meaning that the annual cost will swell to $1.2 trillion.

The Alzheimer’s Association is collaborating with partners from around the country to help communities “Go Purple.” These include the Las Vegas CME – Medical and Health Education for All, the California Association of School Health Educators (CASHE) and Cox 11, a community station in Hampton Roads, VA, which are all spreading the word about ways to get involved at the local level. Ruby Tuesday will also raise awareness for Alzheimer’s Action Day at select locations, giving 20 percent of purchases to the Walk to End Alzheimer’s when customers present a flyer to their server on September 21.

“Supporting Alzheimer’s Association specifically on Alzheimer’s Action Day will help generate much needed awareness about this disease and what we can do as a community to support families with this disease on a daily basis,” a Ruby Tuesday spokeswoman said. “With the GiveBack Program specifically, we hope to raise funds within the communities of our restaurant that will directly contribute to research and ultimately find a cure for Alzheimer’s.”

What are you doing in your community to educate colleagues, peers, family and others about this disease? How can other stakeholders – including health systems and government – get more involved and join in efforts to raise awareness around the impact of Alzheimer’s year-round?

Categories: Access to Care

August Health Awareness Days Provide Opportunities to Take Action

As young people across the country go back to school, patient advocates and government stakeholders are leveraging awareness days to help communities learn about health issues impacting children, prevention strategies and efforts to improve care. Here are some examples:

Children’s Eye Health and Safety Month
Each August organizations including the Envision Foundation underscore the need for screenings and examinations to promote early detection, intervention and prevention of vision problems in children.

Paul DeMiglio

Paul DeMiglio

Vision disorders in children cost Americans more than $5.7 billion in direct and indirect expenses each year, while the overall cost of vision problems nationwide soars to an estimated $139 billion (includes long-term care, productivity loss and medical bills), according to Prevent Blindness America. Treating eye disorders and vision loss early in life helps protect children from developing chronic, lifelong conditions that become more expensive to treat because of long-term, indirect costs that increase as populations age.

“The beginning of a new school year is an exciting time in a child’s life,” Hugh R. Parry, President and CEO of Prevent Blindness America, said in a statement.  “By working together with parents and educators, we hope to give all our kids a bright and healthy start!”

National Immunization Awareness Month
According to the Centers for Disease Control and Prevention (CDC), the National Public Health Information Coalition (NPHIC) highlights the need to improve national immunization coverage levels throughout August. To communicate the importance of immunizations now and throughout the year, NPHIC also developed a toolkit tailored to various populations including babies and pregnant women, pre-teens and teens, young adults, and adults. The toolkit seeks to:

  • Encourage parents of young children to get recommended immunizations by age 2.
  • Help parents ensure older children, preteens and teens have received all recommended vaccines by the time they return to school.
  • Remind college students to catch up on immunizations before they move into dormitories.
  • Educate adults, including health care workers, about vaccines and boosters they may need.
  • Urge pregnant women to get vaccinated to protect newborns from diseases like whooping cough.
  • Raise awareness that the next flu season is only a few months away.

The CDC also makes a wide array of resources available for those who want to learn more about the importance of immunizations or spread the word.

Neurosurgery Outreach Awareness Month
The American Association of Neurological Surgeons (AANS) is among the organizations that underscores why the beginning of the school year is a great time to educate communities about strategies to prevent sports-related head and neck injuries like concussions. AANS provides tools to help others more effectively identify symptoms of potentially serious head/neck injuries and take preventive steps to ensure safety, also offering the following tips:

  • Buy and use helmets or protective headgear approved by the American Society for Testing Materials for sports 100 percent of the time.
  • Remain abreast of the latest guidelines and rules governing sports with a high prevalence of head injuries including cheerleading, volleyball, and soccer.

“Concussion awareness, understanding the symptoms of a potential concussion or other traumatic brain injury, is critically important in all sports,” AANS Public Relations Committee chair Kevin Lillehei, MD, FAANS, said in a statement. “Educating the public is one of the best weapons we have when it comes to combating these types of injuries. That is why it’s so important to raise awareness in the community and explain just what some of the effects are that these injuries have.”

Psoriasis Awareness Month
Sponsored by The National Psoriasis Foundation each year, Psoriasis Awareness Month is dedicated to “raise awareness, encourage research and advocate for better care for people with psoriasis.”

The most common autoimmune disease in the US affecting 7.5 million Americans, Psoriasis occurs when the immune system sends out faulty signals that speed up the growth of skin cells and produce red, scaly patches that itch and bleed. About 20,000 children under 10 are also diagnosed, often experiencing symptoms that include pitting and discoloration of the nails, severe scalp scaling, diaper dermatitis or plaques.

As part of Psoriasis Awareness Month, NPF is creating a community of “Pscientists” to “answer real‑world questions about psoriasis and psoriatic arthritis.”

Spinal Muscular Atrophy Awareness Month
Although it’s considered a “rare disorder” with approximately 1 in 6000 babies born affected by it, Spinal Muscular Atrophy (SMA) is a motor neuron disease that causes voluntary muscles to weaken and in some cases can lead to death, according to the National Institutes of Health’s (NIH) National Institute of Neurological Disorders and Stroke (NINDS). Types I, II and III belong to a group of hereditary diseases that weaken the voluntary muscles in the arms and legs of infants and children, contributing to breathing issues, difficulty eating and drinking, impaired mobility and orthopedic complications.

Families of SMA, which has coordinated activities around SMA Awareness Month since 1996, and the Muscular Dystrophy Association (MDA), are two national organizations that support those living with SMA. Click here to learn about events this month, community networks and research projects for treatment and therapies.

What activities are taking place in your community to support one or more of these awareness days? What could the institutions in your neighborhood, workplace or at your school be doing year-round to more effectively engage populations about critical health issues?

Categories: Access to Care