Archive for the ‘Activism’ Category

Approaching December Deadline for Those With Lyme Disease Needing Financial Help

https://lymelightfoundation.org/grants/

Grants

 Who is eligible?

  • Anyone diagnosed with Lyme disease through age 25 and can demonstrate a qualified financial need.
  • Applicant must be an active patient of a US-based Lyme-literate MD, ND, DO, PA-C, or NP. NDs must have graduated from a CNME accreditedinstitution. All practitioners must have prescribing rights in their state of practice.
  • Must be a USA resident.

Upcoming Application Deadlines

Be sure to apply early so we can ensure your application is complete before the deadline. 

  • Deadline: April 26, 2019, Notification: June 21, 2019
  • Deadline: August 23, 2019, Notification: October 18, 2019
  • Deadline: December 13, 2019, Notification: February 21, 2020

All parts of the application and supporting letters must be received by the deadline date in order to be considered. LymeLight Foundation distributes grants 3 times a year.

Amount of Grant

Grants are awarded in incremental amounts. The lifetime maximum amount of a grant is $10,000 per individual or $30,000 per family.

Questions about grants can be emailed to grants@lymelightfoundation.org  Please see the below list of FAQs which may answer your questions.

Frequently Asked Questions

General

What expenses does a grant cover?

A grant covers expenses relating to the treatment of Lyme disease. This includes medication, supplements, doctor visits, lab testing, alternative practitioners such as Acupuncturists and Chiropractors, and transportation to and from the out of area doctor or lab. Grants may not be used for education expenses or Lyme treatment for anyone other than the grant recipient (i.e. parents or friends). Grants may not be used for past medical debt, food, rent or mortgage expenses.

What is the maximum grant? How does the incremental funding work?

The lifetime maximum grant is $10,000 per individual or $30,000 per family. LymeLight provides an initial, smaller grant in order to partner with the grant recipient. LymeLight must receive the appropriate feedback before additional funding is considered. Each recipient is required to verify use of funds and to complete the grant feedback form and then is eligible to re-apply for additional funding.

Application Questions

How does the application process work?

LymeLight Foundation uses an online application system. To apply you must submit an application form, doctor’s letter and letters of support. You will be notified of the decision via email and the decision will also be posted to your account.

I have more than one child struggling with Lyme, how do I apply?

Each family is required to use the same account with the same login and password. However, a separate application and doctor letter is required for each child applying. IMPORTANT: Do NOT create a new Account for each family member. Parents may complete the application for their children. If awarded a grant we require each child to have his or her own pledge form, feedback form and submission of receipts.

What is required for the doctor’s letter?

LymeLight Foundation will determine medical eligibility with the help of the applicant’s treating US physician. The doctor’s letter must meet the following requirements:

  • Addressed to LymeLight Foundation
  • Written on the doctor’s letterhead
  • Signed by the doctor
  • Confirm the diagnosis of Lyme disease
  • State applicant’s name, date of birth and provide a brief case history
  • It is helpful to have the doctor speak to the financial need

A positive lab test does not replace the need for a doctor letter. A treating physician is defined as a Lyme-literate MD, ND, DO, PA-C or NP. NDs must be have graduated from a CNME accredited institution. The grant application is not complete and eligible for consideration by the Board of Directors until LymeLight receives the doctor’s letter. The doctor’s letter is valid for 2 years.

Should I check in with LymeLight while my grant application is in process?

We will send you email notifications when we have received your application, doctor letter, letters of support and a final email when your application is complete. You may login at any time to view your account and check the status of your application and see any remaining tasks that are due.

How will I know if I will be awarded a grant?

LymeLight Foundation will email each applicant after the board meeting with a decision. The decision will also be posted to the applicant’s online account. The notification will occur approximately 2 months after the application deadline. Your patience is appreciated.

After Decision

I have been put on the waitlist, now what?

To be reconsidered at future board meetings, you must fill out the waitlist update by logging in below. We encourage you to provide updates as to your status and current need. You may provide more details on your financial situation, current medical needs or any new obstacle that we may not be aware of. Please share anything you think we should know. Your application will stay active for one year. At that point you can apply again if still eligible.

What happens when a grant is awarded?

If you are selected for a grant, it is required that you sign an online pledge form committing to provide feedback and verifying the use of funds. We require the submission of receipts used for treatment. We also want to learn more about you and your Lyme journey. It may be used as a Story of Hope on our website. We will be interested to learn how your treatment grant affected your healing. We will contact you if we are ready to share it online to ensure this does not present a problem.  Please also send photos. We appreciate frequent communication. Please send communication to grants@lymelightfoundation.org.

Do I need to use all my funds before giving feedback and asking for an additional grant?

You do not need to use all your funds before applying for an additional grant. We recommend at least half of your initial grant funds be spent before you re-apply. However, we realize that grant recipients need financial visibility when making ongoing treatment choices and medical appointments. We also recognize that treatment disruptions are not beneficial. If you are re-applying before the majority of funds are spent please provide a plan for the remaining funds on the re-application form.

Applying for a Grant

 

Category:

Activism, Lyme Vaccine

Center For Lyme Launches to Lobby Congress For More Research, Treatment Options

https://triblive.com/news/world/center-for-lyme-launches-to-lobby-congress-for-more-research-treatment-options/

Center for Lyme launches to lobby Congress for more research, treatment options

Patrick Varine
PATRICK VARINE

1853820_web1_ptr-lymedisease-091018

SUBMITTED PHOTO/CENTERS FOR DISEASE CONTROL
This undated file photo provided by the U.S. Centers for Disease Control and Prevention shows a blacklegged tick, also known as a deer tick, a carrier of Lyme disease.
A new nonprofit launched this week will focus on lobbying Congress to expand funding for the development of new drugs and diagnostic tools for battling Lyme disease.

The Center for Lyme Action launched on Tuesday in addition to hosting a congressional forum with lawmakers from Minnesota, New Jersey and California, along with Sen. Susan Collins (R-Maine), who gave a keynote address via video.

“The incidence of Lyme and other tick-borne diseases has exploded over the past 15 years,” Collins said in her video statement. “The TICK Act that I authored would apply a three-pronged public health approach to address Lyme and other tick-borne illnesses, establishing a national effort and providing much-needed investments to help slow the spread of these devastating diseases and better protect the health of more Americans.”

Lyme disease is the fastest-growing vector-borne illness in the United States, and Pennsylvania ranks first in the nation when it comes to Lyme cases.

The National Institute of Health earlier this month released a “Strategic Plan for Tick-borne Disease Research” to address the rising incidence of tick-borne disease and better understand the complex interplay between host, tick, and pathogens.

The number of reported cases more than doubled from 2004 to 2016, according to NIH data.

The plan’s five main priorities are:

• Improve the fundamental knowledge about tick-borne diseases;

• Advance research to improve the diagnosis of such diseases;

• Accelerate research to improve their prevention;

• Promote research to improve treatment of all tick-borne diseases;

• Support tools and resources to advance all of the above goals.

“Lyme is a frustrating and debilitating disease, but it’s a problem we can solve,” said Center for Lyme Action co-found Bonnie Crater. “What is needed is dedicated and sustained funding to research and commercialize a better way to diagnosis and treat this growing public health threat.”

Below, hear Bell Township resident Amy Wiester’s story of dealing with nearly a lifetime of Lyme disease’s effects.

Crater said the NIH report is a positive development given that NIH funding has been in decline for many years. In 2000, the NIH budget for Lyme was $2,117 per patient compared to $700 per patient in 2018, according to Crater.

Similar legislation in the House has the goal of creating a national strategy to address Lyme disease and other tick-borne diseases and disorders.

Patrick Varine is a Tribune-Review staff writer. You can contact Patrick at 724-850-2862, pvarine@tribweb.com or via Twitter .

Category:

Activism, Lyme, Uncategorized

Despite Lyme Insurance Law, Some MA patients Can’t Get Coverage

https://www.lymedisease.org/ma-lyme-insurance-coverage/  News Video within Link

Despite Lyme insurance law, some MA patients can’t get coverage

MA Lyme insurance law ignored

In 2016, Massachusetts passed a law mandating insurance coverage for long-term antibiotic treatment for Lyme disease.

According to Boston 25 News reporter Ted Daniel, some patients are being denied that kind of coverage.

The Massachusetts Office of Patient Protection says since the law took effect, there have been three state-level external appeals for denials of long-term antibiotic treatment for Lyme disease.

All were with Blue Cross Blue Shield of Massachusetts.

The insurance company says they’re just following the rules, but the people who wrote the law say they’re not.

As one interviewee put it,

“Unfortunately, Blue Cross is pretending the law didn’t pass in Massachusetts.”

__________________

**Comment**

I’ve also heard that “doctor protection” bills aren’t being followed either, in fact, Lyme literate doctors in those states have been put under intense scrutiny for their treatment of Lyme/MSIDS.

What kind of nation are we when the rule of law no longer means anything?

Category:

Activism, Lyme, Treatment

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Deal on 3-Book Bundle on Lyme and Recovery Topics

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Written

on October 30, 2019

Schumer Amendment Secures First Increase in CDC Lyme Funding in Years

https://www.schumer.senate.gov/newsroom/press-releases/after-leading-the-charge-schumer-announces-passage-of-his-senate-amendment-increasing-by-over-12-cdc-

Press Release

08.27.18

AFTER LEADING THE CHARGE, SCHUMER ANNOUNCES PASSAGE OF HIS SENATE AMENDMENT, INCREASING BY OVER 12% CDC FUNDING TO COMBAT LYME DISEASE; SCHUMER AMENDMENT IN UPCOMING HHS APPROPRIATIONS BILL SECURES FIRST INCREASE IN CDC LYME FUNDING IN YEARS; SENATOR SAYS YEARS-OVERDUE BOOST IN FUNDING WILL SUPPORT ALL-OUT STATE AND LOCAL WAR AGAINST TICK-BORNE ILLNESSES

In Recent Years, Upstate New York Has Seen An Explosion Of Ticks, Lyme Disease, And Other Tick-Borne Illnesses, Making New York The #1 Target For Ticks In The Country

Schumer’s Recently-Passed Amendment To The Health And Human Services Appropriations Bill Will Increase By Over $1 Million CDC Funding To Thwart Tick-Borne Illnesses; Funding Boost Will Be Used To Study, Identify, And Prevent Exposure To Vector-Borne Pathogens That Cause Lyme Disease And Other Tick-Borne Illnesses

Schumer: Funding Increase For CDC To Fight Lyme Disease Will Help Protect Against Tick-Borne Illnesses

U.S. Senate Minority Leader Charles E. Schumer today announced that the U.S. Senate has passed his amendment to the upcoming Health and Human Services (HHS) appropriations bill to increase by 12.15 percent FY2019 funding for the Centers for Disease Control and Prevention (CDC) to combat Lyme disease and other tick-borne illnesses. Specifically, the bill increases Lyme disease funding from FY2018’s level of $10.7M to $12M for FY2019.

Schumer’s amendment secures the first increase in CDC Lyme disease funding in five years. Schumer said that this long-overdue increase in funding will be used to support the all-out state and local war against tick-borne diseases, as New York is the #1 target for tick-related disease in the United States. Schumer called the increase in funding a major victory for communities across Upstate New York and vowed to shepherd the funding through Congress and onto the president’s desk.

“Upstate New York has been feeling the brutal bite of Lyme disease and tick-borne illnesses for years now, and thankfully this long-overdue increase in CDC funding will give us the resources we need to strike back,” said Senator Schumer. “New Yorkers and their children shouldn’t have to worry that spending time outside in their backyards will leave them with a debilitating ailment like Lyme disease, and this funding will help to prevent that. I’m proud to secure this crucial funding to combat the spread of tick-borne illnesses, and will now fight tooth and nail to see that it passes Congress and is signed into law.”

Schumer said that the increase in funding from the CDC will specifically be used to target vector-borne pathogens which cause diseases in human beings. The funding increase will help understand when, where, and how people become exposed to vector-borne pathogens, as well as help to prevent exposure to vector-borne pathogens and mitigate potential consequences of infection. Additionally, the funding will be used to help implement vector-borne disease diagnostics, surveillance, control, and prevention programs.

Lyme disease is a bacterial infection carried by deer ticks, which can be transmitted by a bite to a human or animal host. If left untreated, the bacterium Borrelia burgdorferi travels through the bloodstream, manifests itself in body tissues, and causes mild or severe symptoms, depending on the case. Lyme disease begins as a rash at the location of the tick bite and then spreads to the nervous system and joints. Early diagnosis and antibiotic treatment are crucial to recovery. Appropriate antibiotic use in the early stages of Lyme disease typically results in a swift and total recovery. Untreated and undiagnosed Lyme disease – which regularly occurs – can lead to debilitating effects on a person’s health.

Senator Schumer has long fought for federal funding for the prevention, diagnosis, and treatment of tick-borne illnesses like Lyme disease, which have seen a major spike in cases across New York State. Earlier in 2018, during an in-person meeting with CDC Director Dr. Robert Redfield, Schumer received a firm commitment from the director that he would be working to address Lyme disease in New York State. Additionally, Schumer played an integral role in securing funding for the CDC in this year’s FY2018 omnibus spending bill — Schumer, one of 4 negotiators, secured $8.005 billion in the federal funding for the CDC, a $900 million increase from FY17. Schumer also helped secure a historic $3 billion increase in National Institutes of Health (NIH) funding, which can be used to expand and build upon existing NIH-funded Lyme disease research that is already occurring at New York institutions, such as Stony Brook, Columbia University, in the SUNY system and at Hunter College. Schumer has traveled throughout New York State advocating for increased funding to fight tick-borne illnesses, and will continue to advocate for these funds for New Yorkers.

 

 

Category:

Activism, Lyme, Uncategorized