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Save the Orphan Drug Tax Credit!

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Right now, both the House and the Senate are reviewing the future of the Orphan Drug Tax Credit as part of the Tax Cuts and Jobs Act.

  • The House has proposed repealing the ODTC altogether
  • The Senate has proposed to substantially weaken the ODTC, effectively cutting it in half and limiting those who would qualify for it.

NORD is adamantly opposed to both of these proposals, which is why we are calling on all advocates to call Congress and urge them to Save the Orphan Drug Tax Credit in its entirety!

How? Use the resources below to share a message on social media and tag your Senators and Representative, call, email, share an image, and more!

Why is the ODTC Important for Rare Diseases?

The ODTC allows drug manufacturers to claim a tax credit of 50 percent of the qualified costs of clinical research and drug testing of orphan drugs (drugs for diseases affecting 200,000 Americans or fewer). The ODTC is part of a package of provisions enacted in 1983 in the Orphan Drug Act (ODA) that provides incentives for drug companies to develop products for rare diseases. This legislation has been extremely successful.

Without the ODTC, one-third fewer orphan drugs would be developed going forward.

In the decade before the ODA, only 10 medicines were developed by industry for rare diseases. Since 1983, however, more than 3,500 potential treatments have been designated as an orphan drug, and more than 500 orphan therapies have been approved by FDA. This is a direct result of the incentives provided by the ODA, including the tax credit.

Use the images below in your social media posts to make a bigger impact.

Ways to Take Action

Call Your Senators and Representatives Today!

CALL SCRIPT: 

• My name is [NAME] and I’m a voter and concerned constituent calling from [CITY].

• I understand [Senator or Representative] [NAME] is currently evaluating the Tax Cuts and Jobs Act.

• I am asking the [Senator or Representative] to stand up for the rare disease community and OPPOSE the proposal to cut the credit in half in the Senate bill, and repeal it entirely in the House bill.

• I am concerned because I am a [patient, family member, doctor etc. – explain your personal connection].

• 95 percent of men, women, and children with rare diseases are still waiting for their very first treatment for their disease.

• Repealing or weakening the Orphan Drug Tax Credit would mean potentially more than 10 fewer orphan therapies being developed each year, resulting in thousands of additional patients each year still left waiting.

• [If you or a loved one are still waiting for a therapy for your or their disease, tell your personal story here!]

• I ask the [Senator or Representative] to stand up for the rare disease community and protect the Orphan Drug Tax Credit.

Thank you for your time and consideration.

Email Your Senators and Representatives Today!

Email Script:

Subject Line: 

Please Oppose Repeal or Weakening of the Orphan Drug Tax Credit

Body of Email:

As your constituent, I am writing today to ask that you oppose the proposed repeal and weakening of the Orphan Drug Tax Credit within the Tax Cuts and Jobs Act. The Senate version cuts the credit in half, and the House version repeals it entirely.

I understand that the Tax Cuts and Jobs Act is intended to simplify and improve the tax code, but repealing or weakening the Orphan Drug Tax Credit will only harm patients with rare diseases. Over 95 percent of individuals with rare diseases are still waiting for a treatment for their disease, and the Orphan Drug Tax Credit is a critical incentive to ensuring companies develop these treatments.

Congress has stood up for the rare disease community many times, including by enacting the 21st Century Cures Act and the Food and Drug Administration Reauthorization Act. But by repealing or weakening the Orphan Drug Tax Credit, one of the only credits that actually saves lives, Congress will be moving in the opposite direction.

Please join me and the entire rare disease community in fighting for the Orphan Drug Tax Credit, and ensuring it will not be repealed or weakened as part of tax reform.

Join the conversation on social media to make sure the voices of the rare disease community are heard!

  • Use the primary hashtag: #SaveOrphanDrugs
  • Jointly with: #raredisease #OrphanDrugTaxCredit 

To tag Senators and Representatives on social media, find their information here.

Sample Tweet Messages:

  • #SaveOrphanDrugs for 30M Americans w/ #rarediseases who rely on future development of #OrphanDrugs: www.rareaction.org/saveorphandrugs
  • {Tag Senator or Rep} Please #SaveOrphanDrugs to preserve my hope of a treatment for my #raredisease & ensure future development of #OrphanDrugs. {include picture of yourself}
  • Of the 7K #rarediseases, only a few hundred have approved treatments. Repealing #OrphanDrug Tax Credit would result in 1/3 fewer treatments 4 patients who need them. Pls #SaveOrphanDrugs
  • The #OrphanDrug Tax Credit gives me hope for a future treatment for my #raredisease. Please don’t take away my hope. Please #SaveOrphanDrugs {insert picture of yourself}
  • I stand by @RareDiseases and 200 other #raredisease patient organizations. Please #SaveOrphanDrugs! Me and 30M Americans rely on it.
  • I am a #raredisease patient who does not have a treatment. Repealing the #OrphanDrug Tax Credit takes away my hope of a treatment. Please #SaveOrphanDrugs!
  • Retweet & take action to #SaveOrphanDrugs. Millions of #raredisease patients rely on it for the hope of a future treatment. Call Congress here: www.rareaction.org/saveorphandrugs
  • The #OrphanDrug Tax Credit gives hope to 95% of ppl w/ #rarediseases who still don’t have a treatment. Don’t take away hope. #SaveOrphanDrugs
  • Taking away the #OrphanDrug Tax Credit takes away hope. Please don’t steal my hope. #SaveOrphanDrugs. {insert picture of yourself}
  • 1/3 fewer #orphandrugs will be developed moving fwd if the #OrphanDrug Tax Credit is taken away. We can’t go backwards. Please #SaveOrphanDrugs by taking action here: www.rareaction.org/saveorphandrugs

Sample Facebook Messages:

  • Will you help me #SaveOrphanDrugs? Congress is debating the repeal of the #OrphanDrug Tax Credit (ODTC) which would steal hope from patients who still don’t have an approved treatment. Without the ODTC, one-third fewer new treatments will be developed moving forward. Please, take a moment to call or email your Senators and Representative here: www.rareaction.org/saveorphandrugs
  • I stand with @NationalOrganizationforRareDisorders [or your organization] and 200 other #raredisease patient advocacy organizations in support of the #OrphanDrug Tax Credit! Please join me in telling Congress to not repeal it. 30 million Americans with #rarediseases, including me, rely on it. Please #SaveOrphanDrugs and join me by taking action here: www.rareaction.org/saveorphandrugs
  • Congress is considering the repeal of the #OrphanDrug Tax Credit right now. Please join me and #SaveOrphanDrugs. Why? Because without the ODTC, one-third fewer #orphandrugs will be developed moving forward. That takes away hope for millions of Americans who still don’t have a treatment for their #raredisease. Take action now! Call on Congress here: www.rareaction.org/saveorphandrugs

State Specific Messages to Share

Twitter:

{Tag Senator or Rep} Please #SaveOrphanDrugs to preserve my hope of a treatment for my #raredisease & ensure future development of #OrphanDrugs. {include picture of yourself}

{Tag Senator or Rep} #RareDisease patients in {insert state} rely on the #OrphanDrug Tax Credit for the possibility of treatments! Don’t take away our hope. Please #SaveOrphanDrugs

{Tag Senator or Rep} #SaveOrphanDrugs! Please don’t pass #taxreform that repeals or weakens the #OrphanDrug Tax Credit. #RareDisease patients in {insert state} rely on it.

{Tag Senator or Rep} will you stand with #raredisease patients in {insert state} who are relying on the #OrphanDrug Tax Credit? Don’t repeal or weaken the #OrphanDrug Tax Credit! Please stand with us & #SaveOrphanDrug!

{Tag Senator or Rep} {insert state} #raredisease patients need you to #SaveOrphanDrugs! Please don’t repeal or weaken the #OrphanDrug Tax Credit!

Facebook:

{Tag Senator or Rep} will you please #SaveOrphanDrugs? While considering tax reform, please do not repeal or weaken the #OrphanDrug Tax Credit (ODTC). This tax credit provides an incentive for companies to develop treatments for people with #rarediseases. Without the ODTC, one-third fewer new treatments will be developed moving forward.  I need a treatment for my #raredisease. Please don’t steal my hope and the hope of other people in {insert state} who still don’t have an approved treatment.

{Tag Senator or Rep} please do not repeal or weaken the #OrphanDrug Tax Credit while voting on tax reform. By taking it away or altering it any way, you will be taking away hope for people in {insert state} who still don’t have a treatment for their rare disease. Please don’t take away hope. Please #SaveOrphanDrugs!

{Tag Senator or Rep} Did you know that of the 7,000 #rarediseases, only a few hundred have approved treatments? Repealing the #OrphanDrug Tax Credit would result in one-third fewer orphan drugs from being developed moving forward. By repealing the ODTC, you will be stealing hope from patients who still don’t have an approved treatment. Please don’t take away hope from people in {insert state} living with rare diseases. Please #SaveOrphanDrugs!

Title

Send a video message to your Senators and Representative through Facebook, Twitter and/or Email. A sample video message is below. If on social, make sure you use the hashtag #SaveOrphanDrugs

Dear [enter Senators/Representative here],

Please save orphans drugs by preserving the Orphan Drug Tax Credit.

My name is [blank], I live in [blank], and I am/have [connection to rare disease community].

The ODTC gives hope to the 95% of individuals with a rare disease living without a treatment.

Without the ODTC, 33% fewer orphan drugs will be developed going forward.

[Insert personal connection, e.g. have a treatment due to the ODTC, or still waiting for a treament and need the ODTC to remain in place].

Please stand up for me and the rest of the rare disease community and #SaveOrphanDrugs.

Share Message on Social Media and Tag Your Senators

Download the image below, print it out, fill in the blanks, post it on social media, and tag your Senators. Find the Facebook profile for your Senator here.

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